Medicaid Long-Term Services and Supports and Caregiving Needs of Caregivers of Individuals with Intellectual and Developmental Disabilities
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| Title: | Medicaid Long-Term Services and Supports and Caregiving Needs of Caregivers of Individuals with Intellectual and Developmental Disabilities |
|---|---|
| Language: | English |
| Authors: | Ariana M. Mastrogiannis, Caren Steinway, Telmo C. Santos, Jack Chen, John Berens, Thomas Davis, Michelle Cornacchia, Jason Woodward, Ilka Riddle, Brittany Spicer, Charmaine Wright, Lee A. Lindquist, Sophia Jan (ORCID |
| Source: | Journal of Applied Research in Intellectual Disabilities. 2024 37(5). |
| Availability: | Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us |
| Peer Reviewed: | Y |
| Page Count: | 13 |
| Publication Date: | 2024 |
| Document Type: | Journal Articles Reports - Research |
| Descriptors: | Caregivers, Intellectual Disability, Developmental Disabilities, Needs, Services, Health Insurance, Stress Variables, Federal Programs, Health Services, Barriers, Social Support Groups |
| Geographic Terms: | New York, Ohio, Texas, Pennsylvania |
| DOI: | 10.1111/jar.13289 |
| ISSN: | 1360-2322 1468-3148 |
| Abstract: | Background: Long-term care services are funded primarily by Medicaid long-term services and support in the United States, where eligibility is based on care needs of the individual with intellectual and developmental disability alone. Impact of Medicaid waiver services on self-reported caregiver needs is not well understood. Method: Caregivers (n = 405) of individuals with intellectual and developmental disabilities across four states (NY, OH, TX, and PA) completed an online survey. Results: Caregivers reported a moderate degree of burden and susceptibility of stress-induced health breakdown. Despite controlling for the activities of daily living of the care recipient, caregivers of individuals with Medicaid Waiver services reported greater difficulty managing medications (p = 0.013) and finding paid help (p < 0.001) than caregivers of individuals without services. |
| Abstractor: | As Provided |
| Entry Date: | 2024 |
| Accession Number: | EJ1435951 |
| Database: | ERIC |
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| FullText | Links: – Type: pdflink Url: https://content.ebscohost.com/cds/retrieve?content=AQICAHj0k_4E0hTGH8RJwT4gCJyBsGNe_WN95AvKlDbXJGqwxwHoSP2wfzxsLKthK7SX-37TAAAA4zCB4AYJKoZIhvcNAQcGoIHSMIHPAgEAMIHJBgkqhkiG9w0BBwEwHgYJYIZIAWUDBAEuMBEEDH-aGbqHPmjxtiwetwIBEICBmxgndbWly32n5An6ImT35yxJqQUQssZok0YWu3B6VBML-6kBYDFVOd-ytGhHT2kIYjrBUeCRMUYam5CjNwHMUkl854jeRWim1mL7RhSuFhQXCo3Szn2mD3zq58XadpoaTNIuRUZ8bEHdEWiPGLpTUoa8gLUaOZPnjJQEniEeQQChaAER0J_HLVnzndf89pY-uZ2ft5Zl-S8oQccG Text: Availability: 1 Value: <anid>AN0179071284;e0301sep.24;2024Aug20.06:00;v2.2.500</anid> <title id="AN0179071284-1">Medicaid long‐term services and supports and caregiving needs of caregivers of individuals with intellectual and developmental disabilities </title> <p>Background: Long‐term care services are funded primarily by Medicaid long‐term services and support in the United States, where eligibility is based on care needs of the individual with intellectual and developmental disability alone. Impact of Medicaid waiver services on self‐reported caregiver needs is not well understood. Method: Caregivers (n = 405) of individuals with intellectual and developmental disabilities across four states (NY, OH, TX, and PA) completed an online survey. Results: Caregivers reported a moderate degree of burden and susceptibility of stress‐induced health breakdown. Despite controlling for the activities of daily living of the care recipient, caregivers of individuals with Medicaid Waiver services reported greater difficulty managing medications (p =.013) and finding paid help (p &lt;.001) than caregivers of individuals without services.</p> <p>Keywords: adults with intellectual and developmental disabilities; caregiver burden; long‐term care planning</p> <hd id="AN0179071284-2">INTRODUCTION</hd> <p>Because individuals with intellectual and developmental disabilities are living longer, the need for long‐term care (LTC) services has become more prevalent. LTC services include a broad range of paid and unpaid medical and personal care services that assist with activities of daily living (ADLs) and instrumental ADLs. LTC services include nursing facility care, adult daycare programmes, home health aide services, personal care services, transportation, and supported employment (What Is Long‐Term Care?, [<reflink idref="bib34" id="ref1">34</reflink>]). In the United States, LTC services are funded primarily by Medicaid long‐term services and support (LTSS) (Medicaid &amp; People with Disabilities, [<reflink idref="bib20" id="ref2">20</reflink>]). Eligibility for these services vary across states but is largely dependent on having a diagnosis of a developmental disability, eligibility for institutional level of care, Medicaid eligibility, and choice of home and community‐based services over institutional care (Chidambaram &amp; Published, [<reflink idref="bib5" id="ref3">5</reflink>]). Not typically included in eligibility is the capacity of family caregivers to care for their loved ones with intellectual and developmental disability.</p> <p>However, many caregiver health and socioeconomic factors may impact a caregiver's ability to care for loved ones (Burke &amp; Heller, [<reflink idref="bib4" id="ref4">4</reflink>]). Caregivers of individuals with intellectual and developmental disabilities face greater health issues than the general population. Examples include a higher prevalence of diabetes and higher cholesterol among caregivers compared to the general population (Yamaki et al., [<reflink idref="bib37" id="ref5">37</reflink>]) or poorer antibody responses to pneumococcal vaccinations (Gallagher et al., [<reflink idref="bib11" id="ref6">11</reflink>]). In a study of 206 female caregivers from Illinois, the prevalence of arthritis, high blood pressure, obesity, and activity limitations was significantly higher compared to women in the general population (Yamaki et al., [<reflink idref="bib37" id="ref7">37</reflink>]). In Northern Ireland, a study of 1500 caregivers found that caregivers with greater stress, poorer health, older age, and lone caregivers utilised support services more frequently than caregivers with less stress, better health, and those who had additional caregiving support (McConkey, [<reflink idref="bib18" id="ref8">18</reflink>]). These findings suggest that caregiver attributes play an important role in determining the level of support needed to fulfil caregiver responsibilities. Additionally, studies have found certain caregiver attributes, like lower household income, contribute to caregiver stress and mental health challenges (Scherer et al., [<reflink idref="bib29" id="ref9">29</reflink>]). Gender of caregivers can also pose unique challenges because of known differences in health‐related morbidity among female versus male caregivers. It is well documented that most caregivers are female (Sharma et al., [<reflink idref="bib30" id="ref10">30</reflink>]) and in a synthesis of research reviewing caregiving responsibilities and psychiatric morbidity, female caregivers were found to consistently report more psychiatric symptoms than male caregivers (Yee &amp; Schulz, [<reflink idref="bib38" id="ref11">38</reflink>]). Finally, caregivers in racial/ethnic minority groups face additional barriers including stigma and racial discrimination, which may impact access to information sharing opportunities or resources needed (Emmanuel et al., [<reflink idref="bib8" id="ref12">8</reflink>]).</p> <p>Care recipient needs, including level of independent functioning and presence of challenging behaviours, clearly impact the need for LTC supports. McConkey ([<reflink idref="bib18" id="ref13">18</reflink>]) identified higher care recipient dependency for ADL and overactive behaviour as predictors of higher support service utilisation for the care recipient in Ireland. Further, in a national sample of 2406 caregivers of children with only autism spectrum disorder (ASD) and 1363 caregivers of children with ASD and an intellectual disability, caregivers of a child with both diagnoses were more likely to report financial difficulty, reduced work hours, and stopping work (Saunders et al., [<reflink idref="bib28" id="ref14">28</reflink>]). Finally, a study of 130 parents of adults with ASD found the presence of greater caregiver burden with caregiver maladaptive behaviours and poorer overall health. These findings demonstrate the differential impact of care recipient characteristics on need for LTC services.</p> <p>As discussed earlier, in the United States, Medicaid waivers help individuals with intellectual and developmental disabilities receive LTC services within their home and community as opposed to an institutional setting. Medicaid waivers may improve caregiver burden through respite care; home modifications and assistive technology that may reduce the physical demands on caregivers; care coordination to improve access to services; caregiver training and education opportunities; and financial support to decrease caregiver out‐of‐pocket expenses. In a 2020 scoping review, McLean and other found that Medicaid waivers provide economic benefit for states, reduce unmet healthcare needs for people with intellectual and developmental disabilities, increase the likelihood that parents will be able to continue working, and reduce racial disparities in access to care (McLean et al., [<reflink idref="bib19" id="ref15">19</reflink>]). Unfortunately, most of the studies in this review focused on those with ASD as a diagnostic group rather than the larger community of those with intellectual and developmental disabilities (Williamson et al., [<reflink idref="bib35" id="ref16">35</reflink>]). Furthermore, most of the studies in this review used administrative data, rather than direct report from people with intellectual and developmental disabilities or their caregivers. Administrative data, while valuable, may not capture the full range of experiences and challenges faced by individuals with intellectual and developmental disabilities and their caregivers. Self‐reported data may provide a more comprehensive understanding of the impact of Medicaid waivers on individuals with disabilities and their families, offering insights into subjective experiences and unmet needs (Perrin et al., [<reflink idref="bib24" id="ref17">24</reflink>]; Pietz et al., [<reflink idref="bib25" id="ref18">25</reflink>]). Subsequent research has also indicated that access to Medicaid waivers decreases acute care utilisation for individuals with intellectual and developmental disabilities (Dolan et al., [<reflink idref="bib7" id="ref19">7</reflink>]; Franklin et al., [<reflink idref="bib10" id="ref20">10</reflink>]; Gleason et al., [<reflink idref="bib12" id="ref21">12</reflink>]; Wright et al., [<reflink idref="bib36" id="ref22">36</reflink>]).</p> <hd id="AN0179071284-3">Study aims</hd> <p>The present study will identify the different caregiving challenges and stressors among caregivers of those with intellectual disabilities through direct report by caregivers (Aim 1). Additionally, we will examine the associations between these challenging aspects of caregiving among different subgroups of caregivers (Aim 2) and the presence of Medicaid waivers (Aim 3).</p> <hd id="AN0179071284-4">METHOD</hd> <p></p> <hd id="AN0179071284-5">Participants</hd> <p>A convenience sample of family caregivers, over the age of 18, of individuals with intellectual and developmental disabilities were recruited for the study. Participants were recruited through intellectual and developmental disability advocacy groups and healthcare systems in New York, Ohio, Texas, and Pennsylvania. A cross‐sectional survey was completed by caregivers from October 2019 until September 2021 via an electronic survey platform.</p> <hd id="AN0179071284-6">Instruments</hd> <p>To understand the caregiver experience, participants were asked to complete a 20‐min survey that included items on demographics, age, race, ethnicity, state of residence, highest level of education, caregiver perceived health (PROMIS, [<reflink idref="bib26" id="ref23">26</reflink>]), caregiver burden (Zarit et al., [<reflink idref="bib39" id="ref24">39</reflink>]), and stress‐induced health breakdown probability (Holmes &amp; Rahe, [<reflink idref="bib13" id="ref25">13</reflink>]). To understand the needs of the individual with an intellectual and developmental disability, the survey included information about the daily living skills of adolescents and adults with intellectual and developmental disabilities (Maenner et al., [<reflink idref="bib17" id="ref26">17</reflink>]) and the functional independence and adaptive functioning across settings (Bruininks et al., [<reflink idref="bib3" id="ref27">3</reflink>]). After completion, participants were compensated with a $10 electronic gift. Prior to distribution, the investigators gathered feedback on survey contents from subject matter experts and pilot tested the survey with potential study participants.</p> <hd id="AN0179071284-7">PROMIS global health</hd> <p>The Patient‐Reported Outcomes Measurement Information System (PROMIS, [<reflink idref="bib26" id="ref28">26</reflink>]) is a global health assessment tool that measures symptoms, functioning, and healthcare‐related quality of life. The PROMIS Global‐10 is a short form that consists of 10 items that participants rate on a 5‐category scale that includes Poor, Fair, Good, Very Good, and Excellent with a 'I choose not to answer' sixth option. Participants receive two separate scores—one for Global Physical Health and one for Global Mental Health that is transformed to a 0–100 scale with scores of 50 representing the average or mean for the United States general population. Physical health scores are based on questions assessing fatigue, pain, and ability to carry out daily activities like walking, climbing stairs, and carrying groceries. Mental health scores are based on questions assessing anxiousness, depression, and irritability.</p> <hd id="AN0179071284-8">Zarit burden interview</hd> <p>The short Zarit Burden Interview is a popular caregiver self‐report survey with 12 total items (Zarit et al., [<reflink idref="bib39" id="ref29">39</reflink>]). Each item is a statement that participants must answer on a 5‐point scale, from Never (0) to Always (<reflink idref="bib4" id="ref30">4</reflink>). Three of the questions address personal strain on the caregiver, while 9 of the questions address role strain. Role strain includes how caregiving interferes with other roles the caregiver may hold and personal strain includes how caregiving may be personally stressful to the caregiver (Li et al., [<reflink idref="bib16" id="ref31">16</reflink>]). The Zarit score range is 0–48 and a higher score indicates a greater feeling of burden for the caregiver.</p> <hd id="AN0179071284-9">The Holmes‐Rahe Life Stress Inventory</hd> <p>The Holmes‐Rahe Life Stress Inventory is a survey to examine the probability of a stress‐induced health breakdown as a result of life stressors that have occurred in the past year (Holmes &amp; Rahe, [<reflink idref="bib13" id="ref32">13</reflink>]). Participants indicate whether or not they have experienced 43 different life stressors within the past year. Life stressors ranges from 'death of a spouse', 'divorce', 'major changes in health', or 'detention in jail' to 'vacations', 'major holidays', or 'minor violations'. Each item or 'life change unit' contributes to a different level of stress. Participants receive one composite score with a summation of the total points. A score of under 150 points indicates a low probability of stress‐induced breakdown. While a score of 150–300 indicates a 50% chance of stress‐induced breakdown and greater than 300 points indicates an 80% chance of stress‐induced breakdown.</p> <hd id="AN0179071284-10">Waisman ADL</hd> <p>The Waisman ADL is a caregiver‐reported survey on the ADL for individuals with intellectual and developmental disabilities (Maenner et al., [<reflink idref="bib17" id="ref33">17</reflink>]). Participants responded to 17 items on a 3‐point Likert scale which includes 0 (does not do), 1 (does with help), and 2 (does independently/on own). Responses are summed into a total score with lower scores representing less independence. A cutoff score of 21 and over was used to indicate high independence (Maenner et al., [<reflink idref="bib17" id="ref34">17</reflink>]). The W‐ADL has been validated for use as a caregiver report survey for adults with a variety of intellectual and developmental disabilities.</p> <hd id="AN0179071284-11">The scales of independent behaviour‐revised (the problem behaviour section)</hd> <p>The Problem Behaviour Section of the Scales of Independent Behaviour measures adaptive behaviour and problem behaviours in areas involving motor skills, social interaction, language, personal self‐care, punctuality, destructiveness, and inattention (Bruininks et al., [<reflink idref="bib3" id="ref35">3</reflink>]). Caregivers review eight items of distinct challenging behaviours and indicate whether or not the individual exhibits that behaviour.</p> <hd id="AN0179071284-12">Caregiving needs and challenges</hd> <p>Caregiving needs and challenges were measured using Domain 2 of the U.S. Office of the Assistant Secretary for Planning and Evaluation Survey for Caregivers Supporting a Person with a Disability Outside of the Disability Support Service System (Survey for Caregivers Supporting a Person with a Disability Outside of the Disability Support Service System, [<reflink idref="bib31" id="ref36">31</reflink>]). This survey was developed to better understand how informal caregivers of non‐elderly people with disabilities and chronic health conditions successfully assist their loved ones when they do not receive substantial support from the formal disability system. Questions include, 'Thinking about the assistance that you provide to [care recipient's name], what parts have been challenging for you?' and 'What aspects of caregiving have been challenging to you personally?' Each question is followed by the following prompt, 'Which of these has been the most challenging?' Survey responders could select all responses that applied.</p> <hd id="AN0179071284-13">Data analysis</hd> <p>The analysis characterised the sample of caregivers and individuals with intellectual and developmental disabilities. Sociodemographic characteristics and data from the validated measures of both the patient and caregiver population were summarised as frequencies or means and standard deviations (Aim 1). Associations between caregiving challenges/needs, and caregiver demographics were assessed using chi‐square statistics (Aim 2). Logistic regression was used to analyse trends in challenging aspects of caregiving when in the presence of a Medicaid waiver which was expressed as an odds ratio (Aim 3). Adjusted odds ratios were calculated using Waisman ADL scores converted into a binary variable (high/low) and added into the model along with caregiver age, total number of informal/formal supports, and income (high/low). All analyses were conducted using SPSS (version 27).</p> <hd id="AN0179071284-14">Institutional review board</hd> <p>This research study was reviewed by the Northwell Health Institutional Review Board and granted exempt approval.</p> <hd id="AN0179071284-15">FINDINGS</hd> <p></p> <hd id="AN0179071284-16">Caregiver and care recipient demographics</hd> <p>Table 1 summarises the demographics of the caregiver and care recipient. Caregivers (<emph>n</emph> = 405) had a mean age of 52.3 ± 9.8 (range = 22–84), were mostly female (89.4%), White (81.5%), and non‐Hispanic (88.6%). Around 38.3% of caregivers (<emph>n</emph> = 155) reported having a source of social support, defined as an additional individual who could assist with care recipient needs, and may encompass relatives of the care recipient or an unrelated individual. About a third (33.1%; <emph>n</emph> = 122) of respondents named that supportive person as a parent or legal guardian, 8.5% of the caregivers (<emph>n</emph> = 32) identified another relative, and 58.2% of the respondents (<emph>n</emph> = 215) named 'Other' as that person. Around 33% of caregivers (<emph>n</emph> = 135) surveyed were not currently working, 16% worked in a healthcare field (<emph>n</emph> = 65), 14% held an administrative or clerical position (<emph>n</emph> = 57), 12% were in the education field (<emph>n</emph> = 48), 9% worked in financial services (<emph>n</emph> = 36), and 15% identified a different profession (<emph>n</emph> = 60) (Table 1).</p> <p>1 TABLE Sociodemographic characteristics of caregivers and persons with an intellectual or developmental disability (N = 405).</p> <p> <ephtml> &lt;table&gt;&lt;thead valign="bottom"&gt;&lt;tr&gt;&lt;th align="left"&gt;Variables&lt;/th&gt;&lt;th align="left"&gt;Caregiver &lt;italic&gt;N&lt;/italic&gt; (%)&lt;/th&gt;&lt;th align="left"&gt;Person with IDD &lt;italic&gt;N&lt;/italic&gt; (%)&lt;/th&gt;&lt;/tr&gt;&lt;/thead&gt;&lt;tbody valign="top"&gt;&lt;tr&gt;&lt;td align="left"&gt;Age (mean&amp;#8201;+&amp;#8201;SD, range)&lt;/td&gt;&lt;td align="left"&gt;52.3&amp;#8201;+&amp;#8201;9.8 (22&amp;#8211;84)&lt;/td&gt;&lt;td align="left"&gt;22.2&amp;#8201;+&amp;#8201;8.4 (3&amp;#8211;61)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Gender&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Male&lt;/td&gt;&lt;td align="left"&gt;41 (10.1)&lt;/td&gt;&lt;td align="left"&gt;258 (63.7)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Female&lt;/td&gt;&lt;td align="left"&gt;362 (89.4)&lt;/td&gt;&lt;td align="left"&gt;145 (35.8)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Race&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;White&lt;/td&gt;&lt;td align="left"&gt;330 (81.5)&lt;/td&gt;&lt;td align="left"&gt;318 (78.5)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Black or African American&lt;/td&gt;&lt;td align="left"&gt;37 (9.1)&lt;/td&gt;&lt;td align="left"&gt;43 (10.6)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;American Indian/Alaska Native&lt;/td&gt;&lt;td align="left"&gt;2 (0.5)&lt;/td&gt;&lt;td align="left"&gt;2 (0.5)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Asian&lt;/td&gt;&lt;td align="left"&gt;18 (4.4)&lt;/td&gt;&lt;td align="left"&gt;11 (2.7)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Native Hawaiian/Pacific Islander&lt;/td&gt;&lt;td align="left"&gt;0&lt;/td&gt;&lt;td align="left"&gt;1 (0.2)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Other&lt;/td&gt;&lt;td align="left"&gt;10 (2.5)&lt;/td&gt;&lt;td align="left"&gt;20 (4.9)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Ethnicity&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Hispanic&lt;/td&gt;&lt;td align="left"&gt;35 (8.6)&lt;/td&gt;&lt;td align="left"&gt;44 (10.9)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Non&amp;#8208;Hispanic&lt;/td&gt;&lt;td align="left"&gt;359 (88.6)&lt;/td&gt;&lt;td align="left"&gt;349 (86.2)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Caregiver relation&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left"&gt;&amp;#8208;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Parent&lt;/td&gt;&lt;td align="left"&gt;371 (91.6)&lt;/td&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Grandparent&lt;/td&gt;&lt;td align="left"&gt;8 (2.0)&lt;/td&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Aunt or uncle&lt;/td&gt;&lt;td align="left"&gt;5 (1.2)&lt;/td&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Sibling&lt;/td&gt;&lt;td align="left"&gt;10 (2.5)&lt;/td&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Son or daughter&lt;/td&gt;&lt;td align="left"&gt;1 (0.2)&lt;/td&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Other&lt;/td&gt;&lt;td align="left"&gt;8 (2.0)&lt;/td&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Legal guardian of person with IDD&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left"&gt;&amp;#8208;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Yes&lt;/td&gt;&lt;td align="left"&gt;327 (80.7)&lt;/td&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;No&lt;/td&gt;&lt;td align="left"&gt;78 (19.3)&lt;/td&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Education&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left"&gt;&amp;#8208;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Less than high school&lt;/td&gt;&lt;td align="left"&gt;2 (0.5)&lt;/td&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;High school diploma or GED&lt;/td&gt;&lt;td align="left"&gt;35 (8.6)&lt;/td&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Some college&lt;/td&gt;&lt;td align="left"&gt;74 (18.3)&lt;/td&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Associate's degree&lt;/td&gt;&lt;td align="left"&gt;33 (8.1)&lt;/td&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Bachelor's degree&lt;/td&gt;&lt;td align="left"&gt;151 (37.3)&lt;/td&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Graduate or professional deg.&lt;/td&gt;&lt;td align="left"&gt;109 (26.9)&lt;/td&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Income&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left"&gt;&amp;#8208;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&amp;#60;50&amp;#8201;K&lt;/td&gt;&lt;td align="left"&gt;88 (21.7)&lt;/td&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;50&amp;#8201;K&amp;#8208;99,999&lt;/td&gt;&lt;td align="left"&gt;120 (29.6)&lt;/td&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;100&amp;#8201;K or more&lt;/td&gt;&lt;td align="left"&gt;152 (37.5)&lt;/td&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Medicaid waiver&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Yes&lt;/td&gt;&lt;td align="left"&gt;&amp;#8208;&lt;/td&gt;&lt;td align="left"&gt;261 (64.4)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;On waitlist&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left"&gt;15 (3.7)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Presence of autism spectrum disorder&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Yes&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left"&gt;135 (33.3)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;No&lt;/td&gt;&lt;td align="left"&gt;&amp;#8208;&lt;/td&gt;&lt;td align="left"&gt;270 (66.7)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Waisman ADL score&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Mean&amp;#8201;+&amp;#8201;SD (range)&lt;/td&gt;&lt;td align="left"&gt;&amp;#8208;&lt;/td&gt;&lt;td align="left"&gt;13.5&amp;#8201;&amp;#177;&amp;#8201;9.2 (0&amp;#8211;33)&lt;/td&gt;&lt;/tr&gt;&lt;/tbody&gt;&lt;/table&gt; </ephtml> </p> <p>Around 37.5% of participants (<emph>n</emph> = 152) reported an annual household pre‐tax income of $100,000 or more and 64.2% of participants (<emph>n</emph> = 260) had a bachelor's degree or higher. Despite the higher income cohort, 25.9% of participants (<emph>n</emph> = 105) did not meet essential expenses at least once in the 12 months before the study. A quarter (25.7%, <emph>n</emph> = 104) of caregivers reported that their caregiver responsibilities made it difficult to meet expenses, this is especially true for those with an annual income less than $50,000 (<emph>p</emph> &lt; .001) (Table 1).</p> <p>Care recipients with intellectual and developmental disabilities (<emph>n</emph> = 405) had a mean age of 22.2± 8.4 (range = 3–61). Most were young adults, 17–28 years of age (<emph>n</emph> = 255; 63.5%). Only 19.8% of care recipients were ≤16 years of age (<emph>n</emph> = 80) and 17.3% were above 29 years of age (<emph>n</emph> = 70). They were also mostly male (63.7%, <emph>n</emph> = 258), mostly White (78.5%, <emph>n</emph> = 318), and non‐Hispanic (86.2%, <emph>n</emph> = 349). They had a mean W‐ADL score of 13.5 (SD = 9.2), indicating a low level of independence. A third (33.3%, <emph>n</emph> = 135) of care recipients had ASD. A majority of participants received Medicaid Waiver services (64.4%, <emph>n</emph> = 261).</p> <p>Caregivers had a mental health score of 46.3 ± 8.6 (range = 21.2–67.6) and a physical health score of 44.5 ± 7.2 (range = 23.5–67.7) on the PROMIS Global Health Scale. The mean Zarit score was 19.8 ± 9.1 (range = 0–44), indicating a moderate degree of caregiver burden. The mean Holmes‐Rahe score was 152.9 ± 145.2 (range = 0–1084), indicating that caregivers had a moderate susceptibility of stress‐induced health breakdown.</p> <hd id="AN0179071284-17">Stressors and challenging aspects of caregiving</hd> <p>Caregivers identified stressful and challenging aspects of caregiving through responses to the PROMIS Global Health assessment, the short Zarit Burden interview, the Holmes‐Rahe life stress inventory index, the presence of social support, and identified top caregiving challenges (Table 2). Caregivers found managing difficult behaviours to be the most challenging part of caregiving (22%; <emph>n</emph> = 89) and finding paid help to be the second most challenging (13.1%; <emph>n</emph> = 53). Caregivers reported managing their own emotional or mental distress to be the most personally challenging (18.5%; <emph>n</emph> = 75) while getting a short break from caregiving to be the second most personally challenging (12.6%; <emph>n</emph> = 51). (Table 2).</p> <p>2 TABLE Stressors and challenges faced by caregivers of persons with an intellectual or developmental disability (N = 405).</p> <p> <ephtml> &lt;table&gt;&lt;thead valign="bottom"&gt;&lt;tr&gt;&lt;th align="left"&gt;Variables&lt;/th&gt;&lt;th align="left"&gt;Overall &lt;italic&gt;N&lt;/italic&gt; (%)&lt;/th&gt;&lt;/tr&gt;&lt;/thead&gt;&lt;tbody valign="top"&gt;&lt;tr&gt;&lt;td align="left"&gt;Global health (mean&amp;#8201;&amp;#177;&amp;#8201;SD, range)&lt;/td&gt;&lt;td align="left"&gt;n&amp;#8201;=&amp;#8201;391&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Mental&lt;/td&gt;&lt;td align="left"&gt;46.3&amp;#8201;&amp;#177;&amp;#8201;8.6 (21.2&amp;#8211;67.6)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Physical&lt;/td&gt;&lt;td align="left"&gt;44.5&amp;#8201;&amp;#177;&amp;#8201;7.2 (23.5&amp;#8211;67.7)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Caregiver burden&lt;xref ref-type="fn" rid="tfn1" /&gt;&lt;/td&gt;&lt;td align="left"&gt;n&amp;#8201;=&amp;#8201;369&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Mean&amp;#8201;&amp;#177;&amp;#8201;SD, range&lt;/td&gt;&lt;td align="left"&gt;19.8&amp;#8201;&amp;#177;&amp;#8201;9.1 (0&amp;#8211;44)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Quartile 1&lt;/td&gt;&lt;td align="left"&gt;13.0&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Median&lt;/td&gt;&lt;td align="left"&gt;20.0&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Quartile 3&lt;/td&gt;&lt;td align="left"&gt;26.0&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Caregiver life stressors&lt;xref ref-type="fn" rid="tfn2" /&gt;&lt;/td&gt;&lt;td align="left"&gt;n&amp;#8201;=&amp;#8201;405&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Mean&amp;#8201;&amp;#177;&amp;#8201;SD, range&lt;/td&gt;&lt;td align="left"&gt;152.9&amp;#8201;&amp;#177;&amp;#8201;145.2 (0&amp;#8211;1084)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Low chance of stress&amp;#8208;induced health breakdown&lt;/td&gt;&lt;td align="left"&gt;231 (57.0)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;50% chance of health breakdown&lt;/td&gt;&lt;td align="left"&gt;120 (29.6)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;80% chance of health breakdown&lt;/td&gt;&lt;td align="left"&gt;54 (13.3)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Caregiver social support&lt;/td&gt;&lt;td align="left"&gt;n&amp;#8201;=&amp;#8201;369&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Yes&lt;/td&gt;&lt;td align="left"&gt;155 (38.3)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;If Yes, who?&lt;/td&gt;&lt;td align="left"&gt;n&amp;#8201;=&amp;#8201;154&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Parent&lt;/td&gt;&lt;td align="left"&gt;80 (21.7)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Legal guardian&lt;/td&gt;&lt;td align="left"&gt;42 (11.4)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Sibling&lt;/td&gt;&lt;td align="left"&gt;9 (2.4)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Grandparent&lt;/td&gt;&lt;td align="left"&gt;12 (3.2)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Aunt or uncle&lt;/td&gt;&lt;td align="left"&gt;6 (1.6)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Son or daughter&lt;/td&gt;&lt;td align="left"&gt;5 (1.3)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Other&lt;/td&gt;&lt;td align="left"&gt;215 (58.2)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Aspects of caregiving that have been the most challenging for caregivers providing assistance&lt;/td&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Finding activities that they can participate in&lt;/td&gt;&lt;td align="left"&gt;243 (60.0)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Managing and meeting their social needs&lt;/td&gt;&lt;td align="left"&gt;205 (50.6)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Managing difficult behaviours&lt;/td&gt;&lt;td align="left"&gt;188 (46.4)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Understanding and managing their legal and financial issues&lt;/td&gt;&lt;td align="left"&gt;181 (44.7)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Finding paid help&lt;/td&gt;&lt;td align="left"&gt;176 (43.5)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Helping with their communication&lt;/td&gt;&lt;td align="left"&gt;177 (43.7)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Managing and meeting their emotional needs&lt;/td&gt;&lt;td align="left"&gt;160 (39.5)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Assisting with personal care&lt;/td&gt;&lt;td align="left"&gt;155 (38.3)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Coordinating and managing medications&lt;/td&gt;&lt;td align="left"&gt;120 (29.6)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Coordinating and providing transportation&lt;/td&gt;&lt;td align="left"&gt;98 (24.2)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Other&lt;/td&gt;&lt;td align="left"&gt;15 (3.7)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;The singular most challenging aspects of caregiving for caregivers&lt;/td&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Managing difficult behaviours&lt;/td&gt;&lt;td align="left"&gt;89 (22.0)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Finding paid help&lt;/td&gt;&lt;td align="left"&gt;53 (13.1)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Understanding and managing their legal and financial issues&lt;/td&gt;&lt;td align="left"&gt;43 (10.6)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Assisting with personal care&lt;/td&gt;&lt;td align="left"&gt;36 (8.9)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Finding activities that they can participate in&lt;/td&gt;&lt;td align="left"&gt;38 (9.4)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Managing and meeting their social needs&lt;/td&gt;&lt;td align="left"&gt;22 (5.4)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Managing and meeting their emotional needs&lt;/td&gt;&lt;td align="left"&gt;18 (4.4)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Helping with their communication&lt;/td&gt;&lt;td align="left"&gt;21 (5.2)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Coordinating and managing medications&lt;/td&gt;&lt;td align="left"&gt;15 (3.7)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Coordinating and providing transportation&lt;/td&gt;&lt;td align="left"&gt;5 (1.2)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Other&lt;/td&gt;&lt;td align="left"&gt;10 (2.5)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Aspects that have been challenging to caregivers personally&lt;/td&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Managing the emotional or mental distress of caregiving&lt;/td&gt;&lt;td align="left"&gt;224 (55.3)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Getting a short break from caregiving&lt;/td&gt;&lt;td align="left"&gt;218 (53.8)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Taking care of myself&lt;/td&gt;&lt;td align="left"&gt;183 (45.2)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Getting time with other family members or meeting their needs&lt;/td&gt;&lt;td align="left"&gt;180 (44.4)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Educating others about your relative's disability&lt;/td&gt;&lt;td align="left"&gt;172 (42.5)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Finding a temporary substitute to provide occasional care&lt;/td&gt;&lt;td align="left"&gt;174 (43.0)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Meeting the financial burden of caregiving&lt;/td&gt;&lt;td align="left"&gt;132 (32.6)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Providing physical assistance&lt;/td&gt;&lt;td align="left"&gt;67 (16.5)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Other&lt;/td&gt;&lt;td align="left"&gt;12 (3.0)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Aspects that are the most challenging&lt;/td&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Managing the emotional or mental distress of caregiving&lt;/td&gt;&lt;td align="left"&gt;75 (18.5)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;The financial burden of caregiving&lt;/td&gt;&lt;td align="left"&gt;33 (8.1)51 (12.6)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Getting a short break from caregiving&lt;/td&gt;&lt;td align="left"&gt;47 (11.6)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Taking care of myself&lt;/td&gt;&lt;td align="left"&gt;45 (11.1)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Finding a temporary substitute to provide occasional care&lt;/td&gt;&lt;td align="left"&gt;35 (8.6)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Educating others about your relative's disability&lt;/td&gt;&lt;td align="left"&gt;33 (8.1)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Getting time with other family members or meeting their needs&lt;/td&gt;&lt;td align="left"&gt;17 (4.2)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Providing physical assistance&lt;/td&gt;&lt;td align="left"&gt;7 (1.7)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Other&lt;/td&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Receipt of mental health support&lt;/td&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Yes&lt;/td&gt;&lt;td align="left"&gt;115 (28.4)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;During the past 12&amp;#8201;months, did not meet essential expenses at least once&lt;/td&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Yes&lt;/td&gt;&lt;td align="left"&gt;105 (25.9)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Do your caregiving responsibilities make it difficult to meet your expenses?&lt;/td&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Yes&lt;/td&gt;&lt;td align="left"&gt;104 (25.7)&lt;/td&gt;&lt;/tr&gt;&lt;/tbody&gt;&lt;/table&gt; </ephtml> </p> <p>1 a Zarit: Score range from 0 to 48; Higher score = higher feel of burden.</p> <p>2 b Holmes‐Rahey: &lt;150 = low amount of life change and susceptibility to stress induced health breakdown; 150–300 = 50% chance of health breakdown in next 2 years; &gt;300 = 80% chance of health breakdown in next 2 years.</p> <hd id="AN0179071284-18">Associations between challenging aspects of caregiving and different demographic subgroups of...</hd> <p>Table 3 includes descriptive analysis on the subgroups we used to determine associations between challenging aspects of caregiving for those with intellectual and developmental disabilities and caregiver demographics. Caregivers with a college degree or higher were more likely to have challenges in identifying activities that the care recipient could participate in, managing and meeting their social needs, managing their difficult behaviours, and managing and meeting their emotional needs (<emph>p</emph>'s &lt; .05). Caregivers with an annual household income greater than $50,000 identified managing and meeting the social needs of the care recipient and understating and managing their legal and financial issues as challenges significantly more than caregivers who made less than $50 k (<emph>p</emph>'s &lt; .05) (Table 4).</p> <p>3 TABLE Overall demographics of subgroups of caregivers of individuals with an intellectual/developmental disability in New York, Pennsylvania, Ohio, and Texas (N = 405).</p> <p> <ephtml> &lt;table&gt;&lt;thead valign="bottom"&gt;&lt;tr&gt;&lt;th align="left"&gt;Variables&lt;/th&gt;&lt;th align="left"&gt;Gender (&lt;italic&gt;n&lt;/italic&gt;&amp;#8201;=&amp;#8201;403)&lt;/th&gt;&lt;th align="left"&gt;Race (&lt;italic&gt;n&lt;/italic&gt;&amp;#8201;=&amp;#8201;405)&lt;/th&gt;&lt;th align="left"&gt;Education (&lt;italic&gt;n&lt;/italic&gt;&amp;#8201;=&amp;#8201;404)&lt;/th&gt;&lt;th align="left"&gt;Income (&lt;italic&gt;n&lt;/italic&gt;&amp;#8201;=&amp;#8201;405)&lt;/th&gt;&lt;/tr&gt;&lt;tr&gt;&lt;th align="left"&gt;Male&lt;/th&gt;&lt;th align="left"&gt;Female&lt;/th&gt;&lt;th align="left"&gt;White&lt;/th&gt;&lt;th align="left"&gt;Non&amp;#8208;White&lt;/th&gt;&lt;th align="left"&gt;H.S./GED or less&lt;/th&gt;&lt;th align="left"&gt;Some college or more&lt;/th&gt;&lt;th align="left"&gt;&amp;#60;$50&amp;#8201;K&lt;/th&gt;&lt;th align="left"&gt;&amp;#62;$50&amp;#8201;K&lt;/th&gt;&lt;/tr&gt;&lt;tr&gt;&lt;th align="left"&gt;&lt;italic&gt;N&lt;/italic&gt; (%)&lt;/th&gt;&lt;th align="left"&gt;&lt;italic&gt;N&lt;/italic&gt; (%)&lt;/th&gt;&lt;th align="left"&gt;&lt;italic&gt;N&lt;/italic&gt; (%)&lt;/th&gt;&lt;th align="left"&gt;&lt;italic&gt;N&lt;/italic&gt; (%)&lt;/th&gt;&lt;th align="left"&gt;&lt;italic&gt;N&lt;/italic&gt; (%)&lt;/th&gt;&lt;th align="left"&gt;&lt;italic&gt;N&lt;/italic&gt; (%)&lt;/th&gt;&lt;th align="left"&gt;&lt;italic&gt;N&lt;/italic&gt; (%)&lt;/th&gt;&lt;th align="left"&gt;&lt;italic&gt;N&lt;/italic&gt; (%)&lt;/th&gt;&lt;/tr&gt;&lt;/thead&gt;&lt;tbody valign="top"&gt;&lt;tr&gt;&lt;td align="left"&gt;Age (mean&amp;#8201;+&amp;#8201;SD, range)&lt;/td&gt;&lt;td align="left"&gt;54.8&amp;#8201;&amp;#177;&amp;#8201;11.9 (25&amp;#8211;75)&lt;/td&gt;&lt;td align="left"&gt;52.7&amp;#8201;&amp;#177;&amp;#8201;9.5 (22&amp;#8211;84)&lt;/td&gt;&lt;td align="left"&gt;53.6&amp;#8201;&amp;#177;&amp;#8201;9.6 (22&amp;#8211;84)&lt;/td&gt;&lt;td align="left"&gt;49.9&amp;#8201;&amp;#177;&amp;#8201;10.1 (22&amp;#8211;67)&lt;/td&gt;&lt;td align="left"&gt;50.4&amp;#8201;&amp;#177;&amp;#8201;13.4 (22&amp;#8211;71)&lt;/td&gt;&lt;td align="left"&gt;53.2&amp;#8201;&amp;#177;&amp;#8201;9.3 (22&amp;#8211;84)&lt;/td&gt;&lt;td align="left"&gt;50.1&amp;#8201;&amp;#177;&amp;#8201;11.1 (22&amp;#8211;84)&lt;/td&gt;&lt;td align="left"&gt;53.5&amp;#8201;&amp;#177;&amp;#8201;9.4 (25&amp;#8211;75)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Gender&lt;/td&gt;&lt;td align="left"&gt;&amp;#8208;&lt;/td&gt;&lt;td align="left"&gt;&amp;#8208;&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Male&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left"&gt;35 (10.6)&lt;/td&gt;&lt;td align="left"&gt;6 (8.2)&lt;/td&gt;&lt;td align="left"&gt;4 (10.8)&lt;/td&gt;&lt;td align="left"&gt;37 (10.1)&lt;/td&gt;&lt;td align="left"&gt;7 (8.0)&lt;/td&gt;&lt;td align="left"&gt;30 (11.0)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Female&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left"&gt;295 (89.4)&lt;/td&gt;&lt;td align="left"&gt;67 (91.8)&lt;/td&gt;&lt;td align="left"&gt;33 (89.2)&lt;/td&gt;&lt;td align="left"&gt;328 (89.9)&lt;/td&gt;&lt;td align="left"&gt;81 (92.0)&lt;/td&gt;&lt;td align="left"&gt;242 (89.0)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Race&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left"&gt;&amp;#8208;&lt;/td&gt;&lt;td align="left"&gt;&amp;#8208;&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;White&lt;/td&gt;&lt;td align="left"&gt;35 (85.4)&lt;/td&gt;&lt;td align="left"&gt;295 (82.9)&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left"&gt;29 (80.6)&lt;/td&gt;&lt;td align="left"&gt;300 (83.3)&lt;/td&gt;&lt;td align="left"&gt;63 (73.3)&lt;/td&gt;&lt;td align="left"&gt;236 (87.4)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Black or African American&lt;/td&gt;&lt;td align="left"&gt;2 (4.9)&lt;/td&gt;&lt;td align="left"&gt;35 (9.8)&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left"&gt;5 (13.9)&lt;/td&gt;&lt;td align="left"&gt;32 (8.9)&lt;/td&gt;&lt;td align="left"&gt;15 (17.4)&lt;/td&gt;&lt;td align="left"&gt;19 (7.0)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;American Indian/Alaska Native&lt;/td&gt;&lt;td align="left"&gt;1 (2.4)&lt;/td&gt;&lt;td align="left"&gt;1 (0.3)&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left"&gt;1 (2.8)&lt;/td&gt;&lt;td align="left"&gt;1 (0.3)&lt;/td&gt;&lt;td align="left"&gt;1 (1.2)&lt;/td&gt;&lt;td align="left"&gt;1 (0.4)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Asian&lt;/td&gt;&lt;td align="left"&gt;1 (2.4)&lt;/td&gt;&lt;td align="left"&gt;17 (4.8)&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left"&gt;1 (2.8)&lt;/td&gt;&lt;td align="left"&gt;17 (4.7)&lt;/td&gt;&lt;td align="left"&gt;2 (2.3)&lt;/td&gt;&lt;td align="left"&gt;12 (4.4)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Native Hawaiian/Pacific Islander&lt;/td&gt;&lt;td align="left"&gt;0&lt;/td&gt;&lt;td align="left"&gt;0&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left"&gt;0&lt;/td&gt;&lt;td align="left"&gt;0&lt;/td&gt;&lt;td align="left"&gt;0&lt;/td&gt;&lt;td align="left"&gt;0&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Other&lt;/td&gt;&lt;td align="left"&gt;2 (4.9)&lt;/td&gt;&lt;td align="left"&gt;8 (2.2)&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left"&gt;0&lt;/td&gt;&lt;td align="left"&gt;10 (2.8)&lt;/td&gt;&lt;td align="left"&gt;5 (5.8)&lt;/td&gt;&lt;td align="left"&gt;2 (0.7)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Ethnicity&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Hispanic&lt;/td&gt;&lt;td align="left"&gt;2 (5.0)&lt;/td&gt;&lt;td align="left"&gt;33 (9.3)&lt;/td&gt;&lt;td align="left"&gt;26 (8.0)&lt;/td&gt;&lt;td align="left"&gt;9 (13.4)&lt;/td&gt;&lt;td align="left"&gt;7 (20.0)&lt;/td&gt;&lt;td align="left"&gt;28 (7.8)&lt;/td&gt;&lt;td align="left"&gt;20 (23.8)&lt;/td&gt;&lt;td align="left"&gt;13 (4.8)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Non&amp;#8208;Hispanic&lt;/td&gt;&lt;td align="left"&gt;38 (95.0)&lt;/td&gt;&lt;td align="left"&gt;321 (90.7)&lt;/td&gt;&lt;td align="left"&gt;301 (92.0)&lt;/td&gt;&lt;td align="left"&gt;58 (86.6)&lt;/td&gt;&lt;td align="left"&gt;28 (80.0)&lt;/td&gt;&lt;td align="left"&gt;330 (92.2)&lt;/td&gt;&lt;td align="left"&gt;64 (76.2)&lt;/td&gt;&lt;td align="left"&gt;256 (95.2)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Caregiver relation&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Parent&lt;/td&gt;&lt;td align="left"&gt;38 (95.0)&lt;/td&gt;&lt;td align="left"&gt;331 (91.7)&lt;/td&gt;&lt;td align="left"&gt;309 (93.9)&lt;/td&gt;&lt;td align="left"&gt;62 (83.8)&lt;/td&gt;&lt;td align="left"&gt;30 (85.7)&lt;/td&gt;&lt;td align="left"&gt;340 (92.6)&lt;/td&gt;&lt;td align="left"&gt;74 (86.0)&lt;/td&gt;&lt;td align="left"&gt;253 (93.0)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Grandparent&lt;/td&gt;&lt;td align="left"&gt;1 (2.5)&lt;/td&gt;&lt;td align="left"&gt;7 (1.9)&lt;/td&gt;&lt;td align="left"&gt;5 (1.5)&lt;/td&gt;&lt;td align="left"&gt;3 (4.1)&lt;/td&gt;&lt;td align="left"&gt;2 (5.7)&lt;/td&gt;&lt;td align="left"&gt;6 (1.6)&lt;/td&gt;&lt;td align="left"&gt;5 (5.8)&lt;/td&gt;&lt;td align="left"&gt;3 (1.1)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Aunt or uncle&lt;/td&gt;&lt;td align="left"&gt;0&lt;/td&gt;&lt;td align="left"&gt;5 (1.4)&lt;/td&gt;&lt;td align="left"&gt;0&lt;/td&gt;&lt;td align="left"&gt;5 (6.8)&lt;/td&gt;&lt;td align="left"&gt;1 (2.9)&lt;/td&gt;&lt;td align="left"&gt;4 (1.1)&lt;/td&gt;&lt;td align="left"&gt;2 (2.3)&lt;/td&gt;&lt;td align="left"&gt;3 (1.1)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Sibling&lt;/td&gt;&lt;td align="left"&gt;0&lt;/td&gt;&lt;td align="left"&gt;10 (2.8)&lt;/td&gt;&lt;td align="left"&gt;9 (2.7)&lt;/td&gt;&lt;td align="left"&gt;1 (1.4)&lt;/td&gt;&lt;td align="left"&gt;0&lt;/td&gt;&lt;td align="left"&gt;10 (2.7)&lt;/td&gt;&lt;td align="left"&gt;3 (3.5)&lt;/td&gt;&lt;td align="left"&gt;7 (2.6)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Son or daughter&lt;/td&gt;&lt;td align="left"&gt;0&lt;/td&gt;&lt;td align="left"&gt;1 (0.3)&lt;/td&gt;&lt;td align="left"&gt;1 (0.3)&lt;/td&gt;&lt;td align="left"&gt;0&lt;/td&gt;&lt;td align="left"&gt;0&lt;/td&gt;&lt;td align="left"&gt;1 (0.3)&lt;/td&gt;&lt;td align="left"&gt;0&lt;/td&gt;&lt;td align="left"&gt;1 (0.4)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Other&lt;/td&gt;&lt;td align="left"&gt;1 (2.5)&lt;/td&gt;&lt;td align="left"&gt;7 (1.9)&lt;/td&gt;&lt;td align="left"&gt;5 (1.5)&lt;/td&gt;&lt;td align="left"&gt;3 (4.1)&lt;/td&gt;&lt;td align="left"&gt;2 (5.7)&lt;/td&gt;&lt;td align="left"&gt;6 (1.6)&lt;/td&gt;&lt;td align="left"&gt;2 (2.3)&lt;/td&gt;&lt;td align="left"&gt;5 (1.8)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Legal guardian of person with IDD&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Yes&lt;/td&gt;&lt;td align="left"&gt;33 (82.5)&lt;/td&gt;&lt;td align="left"&gt;293 (83.2)&lt;/td&gt;&lt;td align="left"&gt;263 (81.7)&lt;/td&gt;&lt;td align="left"&gt;64 (88.9)&lt;/td&gt;&lt;td align="left"&gt;33 (91.7)&lt;/td&gt;&lt;td align="left"&gt;294 (82.4)&lt;/td&gt;&lt;td align="left"&gt;74 (89.2)&lt;/td&gt;&lt;td align="left"&gt;215 (80.5)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;No&lt;/td&gt;&lt;td align="left"&gt;7 (17.5)&lt;/td&gt;&lt;td align="left"&gt;59 (16.8)&lt;/td&gt;&lt;td align="left"&gt;59 (18.3)&lt;/td&gt;&lt;td align="left"&gt;8 (11.1)&lt;/td&gt;&lt;td align="left"&gt;3 (8.3)&lt;/td&gt;&lt;td align="left"&gt;63 (17.6)&lt;/td&gt;&lt;td align="left"&gt;9 (10.8)&lt;/td&gt;&lt;td align="left"&gt;52 (19.5)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Education&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Less than high school&lt;/td&gt;&lt;td align="left"&gt;1 (2.4)&lt;/td&gt;&lt;td align="left"&gt;1 (0.3)&lt;/td&gt;&lt;td align="left"&gt;2 (0.6)&lt;/td&gt;&lt;td align="left"&gt;0&lt;/td&gt;&lt;td align="left"&gt;&amp;#8208;&lt;/td&gt;&lt;td align="left"&gt;&amp;#8208;&lt;/td&gt;&lt;td align="left"&gt;2 (2.3)&lt;/td&gt;&lt;td align="left"&gt;0&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;High school diploma or GED&lt;/td&gt;&lt;td align="left"&gt;3 7.3)&lt;/td&gt;&lt;td align="left"&gt;32 (8.9)&lt;/td&gt;&lt;td align="left"&gt;27 (8.2)&lt;/td&gt;&lt;td align="left"&gt;8 (10.7)&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left"&gt;18 (20.5)&lt;/td&gt;&lt;td align="left"&gt;13 (4.8)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Some college&lt;/td&gt;&lt;td align="left"&gt;1 (2.4)&lt;/td&gt;&lt;td align="left"&gt;73 (20.2)&lt;/td&gt;&lt;td align="left"&gt;65 (19.8)&lt;/td&gt;&lt;td align="left"&gt;9 (12.0)&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left"&gt;25 (28.4)&lt;/td&gt;&lt;td align="left"&gt;46 (17.0)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Associate's degree&lt;/td&gt;&lt;td align="left"&gt;5 (12.2)&lt;/td&gt;&lt;td align="left"&gt;28 (7.8)&lt;/td&gt;&lt;td align="left"&gt;25 (7.6)&lt;/td&gt;&lt;td align="left"&gt;8 (10.7)&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left"&gt;11 (12.5)&lt;/td&gt;&lt;td align="left"&gt;21 (7.7)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Bachelor's degree&lt;/td&gt;&lt;td align="left"&gt;19 (46.3)&lt;/td&gt;&lt;td align="left"&gt;130 (36.0)&lt;/td&gt;&lt;td align="left"&gt;121 (36.8)&lt;/td&gt;&lt;td align="left"&gt;30 (40.0)&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left"&gt;21 (23.9)&lt;/td&gt;&lt;td align="left"&gt;105 (38.7)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Graduate or professional deg.&lt;/td&gt;&lt;td align="left"&gt;12 (29.3)&lt;/td&gt;&lt;td align="left"&gt;97 (26.9)&lt;/td&gt;&lt;td align="left"&gt;89 (27.1)&lt;/td&gt;&lt;td align="left"&gt;20 (26.7)&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left"&gt;11 (12.5)&lt;/td&gt;&lt;td align="left"&gt;86 (31.7)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Income&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left"&gt;&amp;#8208;&lt;/td&gt;&lt;td align="left"&gt;&amp;#8208;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&amp;#60;50&amp;#8201;K&lt;/td&gt;&lt;td align="left"&gt;7 (18.9)&lt;/td&gt;&lt;td align="left"&gt;81 (25.1)&lt;/td&gt;&lt;td align="left"&gt;63 (21.1)&lt;/td&gt;&lt;td align="left"&gt;25 (41.0)&lt;/td&gt;&lt;td align="left"&gt;20 (60.6)&lt;/td&gt;&lt;td align="left"&gt;68 (20.9)&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;50&amp;#8201;K&amp;#8208;99,999&lt;/td&gt;&lt;td align="left"&gt;12 (32.4)&lt;/td&gt;&lt;td align="left"&gt;108 (33.4)&lt;/td&gt;&lt;td align="left"&gt;102 (34.1)&lt;/td&gt;&lt;td align="left"&gt;18 (29.5)&lt;/td&gt;&lt;td align="left"&gt;9 (27.3)&lt;/td&gt;&lt;td align="left"&gt;111 (34.0)&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;100&amp;#8201;K or more&lt;/td&gt;&lt;td align="left"&gt;18 (48.6)&lt;/td&gt;&lt;td align="left"&gt;134 (41.5)&lt;/td&gt;&lt;td align="left"&gt;134 (44.8)&lt;/td&gt;&lt;td align="left"&gt;18 (29.5)&lt;/td&gt;&lt;td align="left"&gt;4 (12.1)&lt;/td&gt;&lt;td align="left"&gt;147 (45.1)&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;/tbody&gt;&lt;/table&gt; </ephtml> </p> <p>4 TABLE Associations between challenging aspects of caregiving and caregiver demographics from caregivers of individuals with an intellectual/developmental disability in New York, Pennsylvania, Ohio, and Texas (N = 405).</p> <p> <ephtml> &lt;table&gt;&lt;thead valign="bottom"&gt;&lt;tr&gt;&lt;th align="left"&gt;Challenges&lt;/th&gt;&lt;th align="left"&gt;Gender (&lt;italic&gt;n&lt;/italic&gt;&amp;#8201;=&amp;#8201;403)&lt;/th&gt;&lt;th align="left"&gt;Race (&lt;italic&gt;n&lt;/italic&gt;&amp;#8201;=&amp;#8201;405)&lt;/th&gt;&lt;th align="left"&gt;Education (&lt;italic&gt;n&lt;/italic&gt;&amp;#8201;=&amp;#8201;404)&lt;/th&gt;&lt;th align="left"&gt;Income (&lt;italic&gt;n&lt;/italic&gt;&amp;#8201;=&amp;#8201;405)&lt;/th&gt;&lt;/tr&gt;&lt;tr&gt;&lt;th align="left"&gt;Male&lt;/th&gt;&lt;th align="left"&gt;Female&lt;/th&gt;&lt;th align="left"&gt;White&lt;/th&gt;&lt;th align="left"&gt;Non&amp;#8208;White&lt;/th&gt;&lt;th align="left"&gt;H.S./GED or less&lt;/th&gt;&lt;th align="left"&gt;Some college or more&lt;/th&gt;&lt;th align="left"&gt;&amp;#60;$50&amp;#8201;K&lt;/th&gt;&lt;th align="left"&gt;&amp;#62;$50&amp;#8201;K&lt;/th&gt;&lt;/tr&gt;&lt;tr&gt;&lt;th align="left"&gt;&lt;italic&gt;N&lt;/italic&gt; (%)&lt;/th&gt;&lt;th align="left"&gt;&lt;italic&gt;N&lt;/italic&gt; (%)&lt;/th&gt;&lt;th align="left"&gt;&lt;italic&gt;N&lt;/italic&gt; (%)&lt;/th&gt;&lt;th align="left"&gt;&lt;italic&gt;N&lt;/italic&gt; (%)&lt;/th&gt;&lt;th align="left"&gt;&lt;italic&gt;N&lt;/italic&gt; (%)&lt;/th&gt;&lt;th align="left"&gt;&lt;italic&gt;N&lt;/italic&gt; (%)&lt;/th&gt;&lt;th align="left"&gt;&lt;italic&gt;N&lt;/italic&gt; (%)&lt;/th&gt;&lt;th align="left"&gt;&lt;italic&gt;N&lt;/italic&gt; (%)&lt;/th&gt;&lt;/tr&gt;&lt;/thead&gt;&lt;tbody valign="top"&gt;&lt;tr&gt;&lt;td align="left"&gt;Parts that have been the most challenging for caregivers providing assistance&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Finding activities that they can participate in&lt;/td&gt;&lt;td align="char" char="("&gt;19 (46.3)&lt;/td&gt;&lt;td align="char" char="("&gt;224 (61.9)&lt;/td&gt;&lt;td align="char" char="("&gt;201 (60.9)&lt;/td&gt;&lt;td align="char" char="("&gt;42 (56.0)&lt;/td&gt;&lt;td align="char" char="("&gt;14 (37.8)&lt;/td&gt;&lt;td align="char" char="("&gt;228 (62.1)&lt;xref ref-type="fn" rid="tfn3" /&gt;&lt;/td&gt;&lt;td align="char" char="("&gt;47 (53.4)&lt;/td&gt;&lt;td align="char" char="("&gt;174 (64.0)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Managing and meeting their social needs&lt;/td&gt;&lt;td align="char" char="("&gt;15 (36.6)&lt;/td&gt;&lt;td align="char" char="("&gt;189 (52.2)&lt;/td&gt;&lt;td align="char" char="("&gt;169 (51.2)&lt;/td&gt;&lt;td align="char" char="("&gt;36 (48.0)&lt;/td&gt;&lt;td align="char" char="("&gt;8 (21.6)&lt;/td&gt;&lt;td align="char" char="("&gt;197 (53.7)&lt;xref ref-type="fn" rid="tfn3" /&gt;&lt;/td&gt;&lt;td align="char" char="("&gt;30 (34.1)&lt;/td&gt;&lt;td align="char" char="("&gt;152 (55.9)&lt;xref ref-type="fn" rid="tfn3" /&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Managing difficult behaviours&lt;/td&gt;&lt;td align="char" char="("&gt;15 (36.6)&lt;/td&gt;&lt;td align="char" char="("&gt;173 (47.8)&lt;/td&gt;&lt;td align="char" char="("&gt;152 (46.1)&lt;/td&gt;&lt;td align="char" char="("&gt;36 (48.0)&lt;/td&gt;&lt;td align="char" char="("&gt;10 (27.0)&lt;/td&gt;&lt;td align="char" char="("&gt;178 (48.5)&lt;xref ref-type="fn" rid="tfn3" /&gt;&lt;/td&gt;&lt;td align="char" char="("&gt;39 (44.3)&lt;/td&gt;&lt;td align="char" char="("&gt;129 (47.4)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Understanding and managing their legal/financial issues&lt;/td&gt;&lt;td align="char" char="("&gt;17 (41.5)&lt;/td&gt;&lt;td align="char" char="("&gt;163 (45.0)&lt;/td&gt;&lt;td align="char" char="("&gt;154 (46.7)&lt;/td&gt;&lt;td align="char" char="("&gt;37 (36.0)&lt;/td&gt;&lt;td align="char" char="("&gt;11 (29.7)&lt;/td&gt;&lt;td align="char" char="("&gt;170 (46.3)&lt;/td&gt;&lt;td align="char" char="("&gt;28 (31.8)&lt;/td&gt;&lt;td align="char" char="("&gt;135 (49.6)&lt;xref ref-type="fn" rid="tfn3" /&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Finding paid help&lt;/td&gt;&lt;td align="char" char="("&gt;15 (36.6)&lt;/td&gt;&lt;td align="char" char="("&gt;161 (44.5)&lt;/td&gt;&lt;td align="char" char="("&gt;140 (42.4)&lt;/td&gt;&lt;td align="char" char="("&gt;36 (48.0)&lt;/td&gt;&lt;td align="char" char="("&gt;12 (32.4)&lt;/td&gt;&lt;td align="char" char="("&gt;164 (44.7)&lt;/td&gt;&lt;td align="char" char="("&gt;33 (37.5)&lt;/td&gt;&lt;td align="char" char="("&gt;122 (44.9)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Helping with their communication&lt;/td&gt;&lt;td align="char" char="("&gt;16 (39.0)&lt;/td&gt;&lt;td align="char" char="("&gt;160 (44.2)&lt;/td&gt;&lt;td align="char" char="("&gt;142 (43.0)&lt;/td&gt;&lt;td align="char" char="("&gt;35 (46.7)&lt;/td&gt;&lt;td align="char" char="("&gt;12 (32.4)&lt;/td&gt;&lt;td align="char" char="("&gt;165 (45.0)&lt;/td&gt;&lt;td align="char" char="("&gt;38 (43.2)&lt;/td&gt;&lt;td align="char" char="("&gt;117 (43.0)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Managing and meeting their emotional needs&lt;/td&gt;&lt;td align="char" char="("&gt;14 (34.1)&lt;/td&gt;&lt;td align="char" char="("&gt;146 (40.3)&lt;/td&gt;&lt;td align="char" char="("&gt;130 (39.4)&lt;/td&gt;&lt;td align="char" char="("&gt;30 (40.0)&lt;/td&gt;&lt;td align="char" char="("&gt;9 (24.3)&lt;/td&gt;&lt;td align="char" char="("&gt;150 (40.9)&lt;xref ref-type="fn" rid="tfn3" /&gt;&lt;/td&gt;&lt;td align="char" char="("&gt;28 (31.8)&lt;/td&gt;&lt;td align="char" char="("&gt;115 (42.3)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Assisting with personal care&lt;/td&gt;&lt;td align="char" char="("&gt;16 (39.0)&lt;/td&gt;&lt;td align="char" char="("&gt;139 (38.4)&lt;/td&gt;&lt;td align="char" char="("&gt;123 (37.3)&lt;/td&gt;&lt;td align="char" char="("&gt;32 (42.7)&lt;/td&gt;&lt;td align="char" char="("&gt;16 (43.2)&lt;/td&gt;&lt;td align="char" char="("&gt;139 (37.9)&lt;/td&gt;&lt;td align="char" char="("&gt;33 (37.5)&lt;/td&gt;&lt;td align="char" char="("&gt;106 (39.0)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Coordinating and managing medications&lt;/td&gt;&lt;td align="char" char="("&gt;13 (31.7)&lt;/td&gt;&lt;td align="char" char="("&gt;107 (29.6)&lt;/td&gt;&lt;td align="char" char="("&gt;96 (29.1)&lt;/td&gt;&lt;td align="char" char="("&gt;24 (32.0)&lt;/td&gt;&lt;td align="char" char="("&gt;8 (21.6)&lt;/td&gt;&lt;td align="char" char="("&gt;112 (30.5)&lt;/td&gt;&lt;td align="char" char="("&gt;24 (27.3)&lt;/td&gt;&lt;td align="char" char="("&gt;83 (30.5)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Coordinating and providing transportation&lt;/td&gt;&lt;td align="char" char="("&gt;8 (19.5)&lt;/td&gt;&lt;td align="char" char="("&gt;90 (24.9)&lt;/td&gt;&lt;td align="char" char="("&gt;79 (23.9)&lt;/td&gt;&lt;td align="char" char="("&gt;19 (25.3)&lt;/td&gt;&lt;td align="char" char="("&gt;6 (16.2)&lt;/td&gt;&lt;td align="char" char="("&gt;92 (25.1)&lt;/td&gt;&lt;td align="char" char="("&gt;19 (21.6)&lt;/td&gt;&lt;td align="char" char="("&gt;69 (25.4)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Other&lt;/td&gt;&lt;td align="char" char="("&gt;2 (4.9)&lt;/td&gt;&lt;td align="char" char="("&gt;13 (3.6)&lt;/td&gt;&lt;td align="char" char="("&gt;11 (3.3)&lt;/td&gt;&lt;td align="char" char="("&gt;4 (5.3)&lt;/td&gt;&lt;td align="char" char="("&gt;0&lt;/td&gt;&lt;td align="char" char="("&gt;15 (4.1)&lt;/td&gt;&lt;td align="char" char="("&gt;3 (3.4)&lt;/td&gt;&lt;td align="char" char="("&gt;10 (3.7)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Top most challenging parts for caregivers&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Managing difficult behaviours&lt;/td&gt;&lt;td align="char" char="("&gt;8 (22.2)&lt;/td&gt;&lt;td align="char" char="("&gt;17 (5.1)&lt;xref ref-type="fn" rid="tfn3" /&gt;&lt;/td&gt;&lt;td align="char" char="("&gt;70 (23.2)&lt;/td&gt;&lt;td align="char" char="("&gt;19 (27.9)&lt;/td&gt;&lt;td align="char" char="("&gt;2 (6.9)&lt;/td&gt;&lt;td align="char" char="("&gt;87 (25.6)&lt;/td&gt;&lt;td align="char" char="("&gt;13 (16.7)&lt;/td&gt;&lt;td align="char" char="("&gt;67 (26.6)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Finding paid help&lt;/td&gt;&lt;td align="char" char="("&gt;4 (11.1)&lt;/td&gt;&lt;td align="char" char="("&gt;49 (14.7)&lt;xref ref-type="fn" rid="tfn3" /&gt;&lt;/td&gt;&lt;td align="char" char="("&gt;44 (14.6)&lt;/td&gt;&lt;td align="char" char="("&gt;9 (13.2)&lt;/td&gt;&lt;td align="char" char="("&gt;7 (24.1)&lt;/td&gt;&lt;td align="char" char="("&gt;46 (13.5)&lt;/td&gt;&lt;td align="char" char="("&gt;11 (14.1)&lt;/td&gt;&lt;td align="char" char="("&gt;34 (13.5)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Understanding and managing their legal/financial issues&lt;/td&gt;&lt;td align="char" char="("&gt;2 (5.6)&lt;/td&gt;&lt;td align="char" char="("&gt;41 (12.3)&lt;xref ref-type="fn" rid="tfn3" /&gt;&lt;/td&gt;&lt;td align="char" char="("&gt;39 (12.9)&lt;/td&gt;&lt;td align="char" char="("&gt;4 (5.9)&lt;/td&gt;&lt;td align="char" char="("&gt;5 (17.2)&lt;/td&gt;&lt;td align="char" char="("&gt;38 (11.2)&lt;/td&gt;&lt;td align="char" char="("&gt;9 (11.5)&lt;/td&gt;&lt;td align="char" char="("&gt;32 (12.7)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Assisting with personal care&lt;/td&gt;&lt;td align="char" char="("&gt;9 (25.0)&lt;/td&gt;&lt;td align="char" char="("&gt;27 (8.1)&lt;xref ref-type="fn" rid="tfn3" /&gt;&lt;/td&gt;&lt;td align="char" char="("&gt;25 (8.3)&lt;/td&gt;&lt;td align="char" char="("&gt;11 (16.2)&lt;/td&gt;&lt;td align="char" char="("&gt;6 (20.7)&lt;/td&gt;&lt;td align="char" char="("&gt;30 (8.8)&lt;/td&gt;&lt;td align="char" char="("&gt;11 (14.1)&lt;/td&gt;&lt;td align="char" char="("&gt;24 (9.5)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Finding activities that they can participate in&lt;/td&gt;&lt;td align="char" char="("&gt;3 (8.3)&lt;/td&gt;&lt;td align="char" char="("&gt;34 (10.2)&lt;xref ref-type="fn" rid="tfn3" /&gt;&lt;/td&gt;&lt;td align="char" char="("&gt;33 (10.9)&lt;/td&gt;&lt;td align="char" char="("&gt;5 (7.4)&lt;/td&gt;&lt;td align="char" char="("&gt;4 (13.8)&lt;/td&gt;&lt;td align="char" char="("&gt;33 (9.7)&lt;/td&gt;&lt;td align="char" char="("&gt;11 (14.1)&lt;/td&gt;&lt;td align="char" char="("&gt;22 (8.7)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Managing and meeting their social needs&lt;/td&gt;&lt;td align="char" char="("&gt;5 (13.9)&lt;/td&gt;&lt;td align="char" char="("&gt;17 (5.1)&lt;xref ref-type="fn" rid="tfn3" /&gt;&lt;/td&gt;&lt;td align="char" char="("&gt;19 (6.30&lt;/td&gt;&lt;td align="char" char="("&gt;3 (4.4)&lt;/td&gt;&lt;td align="char" char="("&gt;0&lt;/td&gt;&lt;td align="char" char="("&gt;22 (6.5)&lt;/td&gt;&lt;td align="char" char="("&gt;7 (9.0)&lt;/td&gt;&lt;td align="char" char="("&gt;12 (4.8)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Managing and meeting their emotional needs&lt;/td&gt;&lt;td align="char" char="("&gt;0&lt;/td&gt;&lt;td align="char" char="("&gt;18 (5.4)&lt;xref ref-type="fn" rid="tfn3" /&gt;&lt;/td&gt;&lt;td align="char" char="("&gt;14 (4.6)&lt;/td&gt;&lt;td align="char" char="("&gt;4 (5.9)&lt;/td&gt;&lt;td align="char" char="("&gt;2 (6.9)&lt;/td&gt;&lt;td align="char" char="("&gt;16 (4.7)&lt;/td&gt;&lt;td align="char" char="("&gt;3 (3.8)&lt;/td&gt;&lt;td align="char" char="("&gt;12 (4.8)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Helping with their communication&lt;/td&gt;&lt;td align="char" char="("&gt;3 (8.3)&lt;/td&gt;&lt;td align="char" char="("&gt;18 (5.4)&lt;xref ref-type="fn" rid="tfn3" /&gt;&lt;/td&gt;&lt;td align="char" char="("&gt;20 (6.6)&lt;/td&gt;&lt;td align="char" char="("&gt;1 (1.5)&lt;/td&gt;&lt;td align="char" char="("&gt;0&lt;/td&gt;&lt;td align="char" char="("&gt;21 (6.2)&lt;/td&gt;&lt;td align="char" char="("&gt;2 (2.6)&lt;/td&gt;&lt;td align="char" char="("&gt;17 (6.7)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Coordinating and managing medications&lt;/td&gt;&lt;td align="char" char="("&gt;2 (5.6)&lt;/td&gt;&lt;td align="char" char="("&gt;13 (3.9)&lt;xref ref-type="fn" rid="tfn3" /&gt;&lt;/td&gt;&lt;td align="char" char="("&gt;11 (3.6)&lt;/td&gt;&lt;td align="char" char="("&gt;4 (5.9)&lt;/td&gt;&lt;td align="char" char="("&gt;0&lt;/td&gt;&lt;td align="char" char="("&gt;15 (4.4)&lt;/td&gt;&lt;td align="char" char="("&gt;2 (2.6)&lt;/td&gt;&lt;td align="char" char="("&gt;12 (4.8)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Coordinating and providing transportation&lt;/td&gt;&lt;td align="char" char="("&gt;0&lt;/td&gt;&lt;td align="char" char="("&gt;5 (1.5)&lt;xref ref-type="fn" rid="tfn3" /&gt;&lt;/td&gt;&lt;td align="char" char="("&gt;4 (1.3)&lt;/td&gt;&lt;td align="char" char="("&gt;1 (1.5)&lt;/td&gt;&lt;td align="char" char="("&gt;0&lt;/td&gt;&lt;td align="char" char="("&gt;5 (1.5)&lt;/td&gt;&lt;td align="char" char="("&gt;1 (1.3)&lt;/td&gt;&lt;td align="char" char="("&gt;3 (1.2)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Other&lt;/td&gt;&lt;td align="char" char="("&gt;0&lt;/td&gt;&lt;td align="char" char="("&gt;10 (3.0)&lt;xref ref-type="fn" rid="tfn3" /&gt;&lt;/td&gt;&lt;td align="char" char="("&gt;8 (2.6)&lt;/td&gt;&lt;td align="char" char="("&gt;2 (2.9)&lt;/td&gt;&lt;td align="char" char="("&gt;0&lt;/td&gt;&lt;td align="char" char="("&gt;10 (2.9)&lt;/td&gt;&lt;td align="char" char="("&gt;2 (2.6)&lt;/td&gt;&lt;td align="char" char="("&gt;6 (2.4)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Personally challenging aspects for caregivers&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Managing the emotional or mental distress of caregiving&lt;/td&gt;&lt;td align="char" char="("&gt;17 (41.5)&lt;/td&gt;&lt;td align="char" char="("&gt;207 (57.2)&lt;/td&gt;&lt;td align="char" char="("&gt;193 (58.5)&lt;xref ref-type="fn" rid="tfn3" /&gt;&lt;/td&gt;&lt;td align="char" char="("&gt;31 (41.3)&lt;/td&gt;&lt;td align="char" char="("&gt;15 (40.5)&lt;/td&gt;&lt;td align="char" char="("&gt;208 (56.7)&lt;/td&gt;&lt;td align="char" char="("&gt;46 (52.3)&lt;/td&gt;&lt;td align="char" char="("&gt;158 (58.1)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Getting a short break from caregiving&lt;/td&gt;&lt;td align="char" char="("&gt;18 (43.9)&lt;/td&gt;&lt;td align="char" char="("&gt;200 (55.2)&lt;/td&gt;&lt;td align="char" char="("&gt;174 (52.7)&lt;/td&gt;&lt;td align="char" char="("&gt;44 (58.7)&lt;/td&gt;&lt;td align="char" char="("&gt;17 (45.9)&lt;/td&gt;&lt;td align="char" char="("&gt;201 (54.8)&lt;/td&gt;&lt;td align="char" char="("&gt;47 (53.4)&lt;/td&gt;&lt;td align="char" char="("&gt;150 (55.1)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Taking care of myself&lt;/td&gt;&lt;td align="char" char="("&gt;9 (22.0)&lt;/td&gt;&lt;td align="char" char="("&gt;173 (47.8)&lt;xref ref-type="fn" rid="tfn3" /&gt;&lt;/td&gt;&lt;td align="char" char="("&gt;155 (47.0)&lt;/td&gt;&lt;td align="char" char="("&gt;28 (37.3)&lt;/td&gt;&lt;td align="char" char="("&gt;16 (43.2)&lt;/td&gt;&lt;td align="char" char="("&gt;167 (45.5)&lt;/td&gt;&lt;td align="char" char="("&gt;45 (51.1)&lt;/td&gt;&lt;td align="char" char="("&gt;120 (44.1)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Getting time with other family/meeting their needs&lt;/td&gt;&lt;td align="char" char="("&gt;15 (36.6)&lt;/td&gt;&lt;td align="char" char="("&gt;164 (45.3)&lt;/td&gt;&lt;td align="char" char="("&gt;158 (47.9)&lt;xref ref-type="fn" rid="tfn3" /&gt;&lt;/td&gt;&lt;td align="char" char="("&gt;22 (29.3)&lt;/td&gt;&lt;td align="char" char="("&gt;12 (32.4)&lt;/td&gt;&lt;td align="char" char="("&gt;168 (45.8)&lt;/td&gt;&lt;td align="char" char="("&gt;36 (40.9)&lt;/td&gt;&lt;td align="char" char="("&gt;126 (46.3)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Educating others about your relative's disability&lt;/td&gt;&lt;td align="char" char="("&gt;12 (29.3)&lt;/td&gt;&lt;td align="char" char="("&gt;159 (43.9)&lt;/td&gt;&lt;td align="char" char="("&gt;145 (43.9)&lt;/td&gt;&lt;td align="char" char="("&gt;27 (36.0)&lt;/td&gt;&lt;td align="char" char="("&gt;14 (37.8)&lt;/td&gt;&lt;td align="char" char="("&gt;158 (43.1)&lt;/td&gt;&lt;td align="char" char="("&gt;33 (37.5)&lt;/td&gt;&lt;td align="char" char="("&gt;123 (45.2)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Finding a temporary substitute to provide occasional care&lt;/td&gt;&lt;td align="char" char="("&gt;14 (34.1)&lt;/td&gt;&lt;td align="char" char="("&gt;160 (44.2)&lt;/td&gt;&lt;td align="char" char="("&gt;142 (43.0)&lt;/td&gt;&lt;td align="char" char="("&gt;32 (42.7)&lt;/td&gt;&lt;td align="char" char="("&gt;14 (37.8)&lt;/td&gt;&lt;td align="char" char="("&gt;160 (43.6)&lt;/td&gt;&lt;td align="char" char="("&gt;35 (39.8)&lt;/td&gt;&lt;td align="char" char="("&gt;122 (44.9)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Meeting the financial burden of caregiving&lt;/td&gt;&lt;td align="char" char="("&gt;9 (22.0)&lt;/td&gt;&lt;td align="char" char="("&gt;123 (34.0)&lt;/td&gt;&lt;td align="char" char="("&gt;114 (34.5)&lt;/td&gt;&lt;td align="char" char="("&gt;18 (24.0)&lt;/td&gt;&lt;td align="char" char="("&gt;8 (21.6)&lt;/td&gt;&lt;td align="char" char="("&gt;124 (33.8)&lt;/td&gt;&lt;td align="char" char="("&gt;34 (38.6)&lt;/td&gt;&lt;td align="char" char="("&gt;87 (32.0)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Providing physical assistance&lt;/td&gt;&lt;td align="char" char="("&gt;5 (12.2)&lt;/td&gt;&lt;td align="char" char="("&gt;62 (17.1)&lt;/td&gt;&lt;td align="char" char="("&gt;55 (16.7)&lt;/td&gt;&lt;td align="char" char="("&gt;12 (16.0)&lt;/td&gt;&lt;td align="char" char="("&gt;10 (27.0)&lt;/td&gt;&lt;td align="char" char="("&gt;57 (15.5)&lt;/td&gt;&lt;td align="char" char="("&gt;17 (19.3)&lt;/td&gt;&lt;td align="char" char="("&gt;48 (17.6)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Other&lt;/td&gt;&lt;td align="char" char="("&gt;3 (7.3)&lt;/td&gt;&lt;td align="char" char="("&gt;9 (2.5)&lt;/td&gt;&lt;td align="char" char="("&gt;10 (3.0)&lt;/td&gt;&lt;td align="char" char="("&gt;2 (2.7)&lt;/td&gt;&lt;td align="char" char="("&gt;1 (2.7)&lt;/td&gt;&lt;td align="char" char="("&gt;11 (3.0)&lt;/td&gt;&lt;td align="char" char="("&gt;3 (3.4)&lt;/td&gt;&lt;td align="char" char="("&gt;7 (2.6)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Aspects that are the most challenging for caregivers&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Managing the emotional or mental distress of caregiving&lt;/td&gt;&lt;td align="char" char="("&gt;9 (25.7)&lt;/td&gt;&lt;td align="char" char="("&gt;66 (19.9)&lt;/td&gt;&lt;td align="char" char="("&gt;67 (22.2)&lt;/td&gt;&lt;td align="char" char="("&gt;8 (12.3)&lt;/td&gt;&lt;td align="char" char="("&gt;3 (11.1)&lt;/td&gt;&lt;td align="char" char="("&gt;71 (20.9)&lt;xref ref-type="fn" rid="tfn3" /&gt;&lt;/td&gt;&lt;td align="char" char="("&gt;15 (19.5)&lt;/td&gt;&lt;td align="char" char="("&gt;54 (21.4)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;The financial burden of caregiving&lt;/td&gt;&lt;td align="char" char="("&gt;3 (8.6)&lt;/td&gt;&lt;td align="char" char="("&gt;30 (9.1)&lt;/td&gt;&lt;td align="char" char="("&gt;31 (10.3)&lt;/td&gt;&lt;td align="char" char="("&gt;2 (3.1)&lt;/td&gt;&lt;td align="char" char="("&gt;6 (22.2)&lt;/td&gt;&lt;td align="char" char="("&gt;45 (13.3)&lt;xref ref-type="fn" rid="tfn3" /&gt;&lt;/td&gt;&lt;td align="char" char="("&gt;9 (11.7)&lt;/td&gt;&lt;td align="char" char="("&gt;19 (7.5)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Getting a short break from caregiving&lt;/td&gt;&lt;td align="char" char="("&gt;7 (20.0)&lt;/td&gt;&lt;td align="char" char="("&gt;44 (13.3)&lt;/td&gt;&lt;td align="char" char="("&gt;38 (12.6)&lt;/td&gt;&lt;td align="char" char="("&gt;13 (20.0)&lt;/td&gt;&lt;td align="char" char="("&gt;2 (7.4)&lt;/td&gt;&lt;td align="char" char="("&gt;45 (13.3)&lt;xref ref-type="fn" rid="tfn3" /&gt;&lt;/td&gt;&lt;td align="char" char="("&gt;11 (14.3)&lt;/td&gt;&lt;td align="char" char="("&gt;35 (13.9)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Taking care of myself&lt;/td&gt;&lt;td align="char" char="("&gt;1 (2.9)&lt;/td&gt;&lt;td align="char" char="("&gt;46 (13.9)&lt;/td&gt;&lt;td align="char" char="("&gt;38 (12.6)&lt;/td&gt;&lt;td align="char" char="("&gt;9 (13.8)&lt;/td&gt;&lt;td align="char" char="("&gt;2 (7.4)&lt;/td&gt;&lt;td align="char" char="("&gt;31 (9.1)&lt;xref ref-type="fn" rid="tfn3" /&gt;&lt;/td&gt;&lt;td align="char" char="("&gt;13 (16.9)&lt;/td&gt;&lt;td align="char" char="("&gt;28 (11.1)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Finding a temporary substitute to provide occasional care&lt;/td&gt;&lt;td align="char" char="("&gt;2 (5.7)&lt;/td&gt;&lt;td align="char" char="("&gt;43 (13.0)&lt;/td&gt;&lt;td align="char" char="("&gt;35 (11.6)&lt;/td&gt;&lt;td align="char" char="("&gt;10 (15.4)&lt;/td&gt;&lt;td align="char" char="("&gt;2 (7.4)&lt;/td&gt;&lt;td align="char" char="("&gt;33 (9.7)&lt;xref ref-type="fn" rid="tfn3" /&gt;&lt;/td&gt;&lt;td align="char" char="("&gt;10 (13.0)&lt;/td&gt;&lt;td align="char" char="("&gt;28 (11.1)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Educating others about your relative's disability&lt;/td&gt;&lt;td align="char" char="("&gt;2 (5.7)&lt;/td&gt;&lt;td align="char" char="("&gt;33 (10.0)&lt;/td&gt;&lt;td align="char" char="("&gt;26 (8.6)&lt;/td&gt;&lt;td align="char" char="("&gt;9 (13.8)&lt;/td&gt;&lt;td align="char" char="("&gt;2 (7.4)&lt;/td&gt;&lt;td align="char" char="("&gt;43 (12.7)&lt;xref ref-type="fn" rid="tfn3" /&gt;&lt;/td&gt;&lt;td align="char" char="("&gt;5 (6.5)&lt;/td&gt;&lt;td align="char" char="("&gt;26 (10.3)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Getting time with other family members or meeting their needs&lt;/td&gt;&lt;td align="char" char="("&gt;4 (11.4)&lt;/td&gt;&lt;td align="char" char="("&gt;28 (8.5)&lt;/td&gt;&lt;td align="char" char="("&gt;31 (10.3)&lt;/td&gt;&lt;td align="char" char="("&gt;2 (3.1)&lt;/td&gt;&lt;td align="char" char="("&gt;2 (7.4)&lt;/td&gt;&lt;td align="char" char="("&gt;31 (9.1)&lt;xref ref-type="fn" rid="tfn3" /&gt;&lt;/td&gt;&lt;td align="char" char="("&gt;3 (3.9)&lt;/td&gt;&lt;td align="char" char="("&gt;28 (11.1)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Providing physical assistance&lt;/td&gt;&lt;td align="char" char="("&gt;1 (2.9)&lt;/td&gt;&lt;td align="char" char="("&gt;16 (4.8)&lt;/td&gt;&lt;td align="char" char="("&gt;12 (4.0)&lt;/td&gt;&lt;td align="char" char="("&gt;5 (7.7)&lt;/td&gt;&lt;td align="char" char="("&gt;5 (18.5)&lt;/td&gt;&lt;td align="char" char="("&gt;12 (3.5)&lt;xref ref-type="fn" rid="tfn3" /&gt;&lt;/td&gt;&lt;td align="char" char="("&gt;5 (6.5)&lt;/td&gt;&lt;td align="char" char="("&gt;12 (4.8)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Other&lt;/td&gt;&lt;td align="char" char="("&gt;2 (5.7)&lt;/td&gt;&lt;td align="char" char="("&gt;5 (1.5)&lt;/td&gt;&lt;td align="char" char="("&gt;5 (1.7)&lt;/td&gt;&lt;td align="char" char="("&gt;2 (3.1)&lt;/td&gt;&lt;td align="char" char="("&gt;0&lt;/td&gt;&lt;td align="char" char="("&gt;7 (2.1)&lt;xref ref-type="fn" rid="tfn3" /&gt;&lt;/td&gt;&lt;td align="char" char="("&gt;1 (1.3)&lt;/td&gt;&lt;td align="char" char="("&gt;5 (2.0)&lt;/td&gt;&lt;/tr&gt;&lt;/tbody&gt;&lt;/table&gt; </ephtml> </p> <p>3 * Indicates a significant value (<emph>p</emph> &lt; .05).</p> <p>Among aspects that were reported to be personally challenging to caregivers, 'taking care of myself' was endorsed significantly more often by females (47.8%, <emph>n</emph> = 173) than males (22.0%, <emph>n</emph> = 9). Further, caregivers who were White were more likely to find 'managing the emotional distress from caregiving', and 'getting time with other family members...' to be challenging compared with non‐White caregivers (<emph>p</emph> &lt; .05) (Table 4).</p> <hd id="AN0179071284-19">Associations between challenging aspects of caregiving and presence of Medicaid waivers</hd> <p>Caregivers of care recipients with Medicaid waivers identified 'finding activities the recipient can participate in' (OR = 1.587, 95% CI: 1.048–2.404, <emph>p</emph> = .029), 'finding paid help' (OR = 3.355, 95% CI: 2.140–5.259, <emph>p</emph> &lt; .001), 'helping with their communication' (OR = 1.520, 95% CI: 1.001–2.308, <emph>p</emph> = .050), 'assisting with personal care' (OR = 1.818, 95% CI: 1.176–2.811, <emph>p</emph> = .007), and 'coordinating and managing medications' (OR = 1.932, 95% CI: 1.119–3.114, <emph>p</emph> = .007) as challenges compared to caregivers of care recipients without a Medicaid Waiver. Each of these associations remained significant when controlling for ADLs of the care recipient (Table 5).</p> <p>5 TABLE Associations between the presence of a Medicaid waiver and the challenging aspects of caregiving for caregivers of individuals with an intellectual/developmental disability in New York, Pennsylvania, Ohio, and Texas (N = 405).</p> <p> <ephtml> &lt;table&gt;&lt;thead valign="bottom"&gt;&lt;tr&gt;&lt;th align="left"&gt;Challenges&lt;/th&gt;&lt;th align="left"&gt;Medicaid waiver&lt;/th&gt;&lt;th align="left"&gt;Unadjusted odds ratio&lt;/th&gt;&lt;th align="left"&gt;Adjusted odds ratio&lt;/th&gt;&lt;/tr&gt;&lt;tr&gt;&lt;th align="left"&gt;Yes&lt;/th&gt;&lt;th align="left"&gt;No&lt;/th&gt;&lt;th align="left"&gt;OR&lt;/th&gt;&lt;th align="left"&gt;CI&lt;/th&gt;&lt;th align="left"&gt;Sig&lt;/th&gt;&lt;th align="left"&gt;OR&lt;/th&gt;&lt;th align="left"&gt;CI&lt;/th&gt;&lt;th align="left"&gt;Sig&lt;/th&gt;&lt;/tr&gt;&lt;/thead&gt;&lt;tbody valign="top"&gt;&lt;tr&gt;&lt;td align="left"&gt;Parts that have been the most challenging for caregivers providing assistance&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Finding activities that they can participate in&lt;/td&gt;&lt;td align="char" char="("&gt;167 (64.0)&lt;/td&gt;&lt;td align="char" char="("&gt;75 (52.8)&lt;/td&gt;&lt;td align="char" char="."&gt;1.587&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;1.048&amp;#8211;2.404&lt;/td&gt;&lt;td align="char" char="."&gt;0.029&lt;/td&gt;&lt;td align="char" char="."&gt;0.965&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;0.541&amp;#8211;1.723&lt;/td&gt;&lt;td align="char" char="."&gt;0.905&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Managing and meeting their social needs&lt;/td&gt;&lt;td align="char" char="("&gt;141 (54.0)&lt;/td&gt;&lt;td align="char" char="("&gt;63 (44.4)&lt;/td&gt;&lt;td align="char" char="."&gt;1.473&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;0.977&amp;#8211;2.222&lt;/td&gt;&lt;td align="char" char="."&gt;0.065&lt;/td&gt;&lt;td align="char" char="."&gt;0.802&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;0.447&amp;#8211;1.438&lt;/td&gt;&lt;td align="char" char="."&gt;0.458&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Managing difficult behaviours&lt;/td&gt;&lt;td align="char" char="("&gt;120 (46.7)&lt;/td&gt;&lt;td align="char" char="("&gt;67 (47.2)&lt;/td&gt;&lt;td align="char" char="."&gt;.953&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;0.632&amp;#8211;1.435&lt;/td&gt;&lt;td align="char" char="."&gt;0.817&lt;/td&gt;&lt;td align="char" char="."&gt;2.154&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;1.032&amp;#8211;4.495&lt;/td&gt;&lt;td align="char" char="."&gt;0.041&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Understanding and managing their legal &amp; financial issues&lt;/td&gt;&lt;td align="char" char="("&gt;123 (47.1)&lt;/td&gt;&lt;td align="char" char="("&gt;57 (40.1)&lt;/td&gt;&lt;td align="char" char="."&gt;1.329&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;0.878&amp;#8211;2.011&lt;/td&gt;&lt;td align="char" char="."&gt;0.178&lt;/td&gt;&lt;td align="char" char="."&gt;0.938&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;0.522&amp;#8211;1.686&lt;/td&gt;&lt;td align="char" char="."&gt;0.832&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Finding paid help&lt;/td&gt;&lt;td align="char" char="("&gt;139 (53.3)&lt;/td&gt;&lt;td align="char" char="("&gt;36 (25.4)&lt;/td&gt;&lt;td align="char" char="."&gt;3.355&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;2.140&amp;#8211;5.259&lt;/td&gt;&lt;td align="char" char="."&gt;&amp;#60;0.001&lt;/td&gt;&lt;td align="char" char="."&gt;0.604&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;0.334&amp;#8211;1.095&lt;/td&gt;&lt;td align="char" char="."&gt;0.097&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Helping with their communication&lt;/td&gt;&lt;td align="char" char="("&gt;124 (47.5)&lt;/td&gt;&lt;td align="char" char="("&gt;53 (37.3)&lt;/td&gt;&lt;td align="char" char="."&gt;1.520&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;1.001&amp;#8211;2.308&lt;/td&gt;&lt;td align="char" char="."&gt;0.050&lt;/td&gt;&lt;td align="char" char="."&gt;0.916&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;0.509&amp;#8211;1.649&lt;/td&gt;&lt;td align="char" char="."&gt;0.771&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Managing and meeting their emotional needs&lt;/td&gt;&lt;td align="char" char="("&gt;106 (40.6)&lt;/td&gt;&lt;td align="char" char="("&gt;54 (38.0)&lt;/td&gt;&lt;td align="char" char="."&gt;1.114&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;0.733&amp;#8211;1.695&lt;/td&gt;&lt;td align="char" char="."&gt;0.612&lt;/td&gt;&lt;td align="char" char="."&gt;1.120&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;0.610&amp;#8211;2.058&lt;/td&gt;&lt;td align="char" char="."&gt;0.715&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Assisting with personal care&lt;/td&gt;&lt;td align="char" char="("&gt;113 (43.3)&lt;/td&gt;&lt;td align="char" char="("&gt;42 (29.6)&lt;/td&gt;&lt;td align="char" char="."&gt;1.818&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;1.176&amp;#8211;2.811&lt;/td&gt;&lt;td align="char" char="."&gt;0.007&lt;/td&gt;&lt;td align="char" char="."&gt;0.586&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;0.317&amp;#8211;1.083&lt;/td&gt;&lt;td align="char" char="."&gt;0.088&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Coordinating and managing medications&lt;/td&gt;&lt;td align="char" char="("&gt;89 (34.1)&lt;/td&gt;&lt;td align="char" char="("&gt;30 (21.1)&lt;/td&gt;&lt;td align="char" char="."&gt;1.932&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;1.119&amp;#8211;3.114&lt;/td&gt;&lt;td align="char" char="."&gt;0.007&lt;/td&gt;&lt;td align="char" char="."&gt;0.675&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;0.357&amp;#8211;1.276&lt;/td&gt;&lt;td align="char" char="."&gt;0.226&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Coordinating and providing transportation&lt;/td&gt;&lt;td align="char" char="("&gt;68 (26.1)&lt;/td&gt;&lt;td align="char" char="("&gt;30 (21.1)&lt;/td&gt;&lt;td align="char" char="."&gt;1.315&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;0.807&amp;#8211;2.144&lt;/td&gt;&lt;td align="char" char="."&gt;0.272&lt;/td&gt;&lt;td align="char" char="."&gt;1.548&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;0.786&amp;#8211;3.049&lt;/td&gt;&lt;td align="char" char="."&gt;0.206&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Other&lt;/td&gt;&lt;td align="char" char="("&gt;12 (4.6)&lt;/td&gt;&lt;td align="char" char="("&gt;3 (2.1)&lt;/td&gt;&lt;td align="char" char="."&gt;2.233&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;0.620&amp;#8211;8.048&lt;/td&gt;&lt;td align="char" char="."&gt;0.219&lt;/td&gt;&lt;td align="char" char="."&gt;2.698&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;0.442&amp;#8211;16.674&lt;/td&gt;&lt;td align="char" char="."&gt;0.282&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Personally challenging aspects for caregivers&lt;/td&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;td align="left" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Managing the emotional or mental distress of caregiving&lt;/td&gt;&lt;td align="char" char="("&gt;150 (57.5)&lt;/td&gt;&lt;td align="char" char="("&gt;73 (51.4)&lt;/td&gt;&lt;td align="char" char="."&gt;1.277&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;0.847&amp;#8211;1.926&lt;/td&gt;&lt;td align="char" char="."&gt;0.243&lt;/td&gt;&lt;td align="char" char="."&gt;1.422&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;0.763&amp;#8211;2.650&lt;/td&gt;&lt;td align="char" char="."&gt;0.267&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Getting a short break from caregiving&lt;/td&gt;&lt;td align="char" char="("&gt;146 (55.9)&lt;/td&gt;&lt;td align="char" char="("&gt;71 (50.0)&lt;/td&gt;&lt;td align="char" char="."&gt;1.270&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;0.843&amp;#8211;1.913&lt;/td&gt;&lt;td align="char" char="."&gt;0.254&lt;/td&gt;&lt;td align="char" char="."&gt;1.247&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;0.699&amp;#8211;2.225&lt;/td&gt;&lt;td align="char" char="."&gt;0.455&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Taking care of myself&lt;/td&gt;&lt;td align="char" char="("&gt;122 (46.7)&lt;/td&gt;&lt;td align="char" char="("&gt;60 (42.3)&lt;/td&gt;&lt;td align="char" char="."&gt;1.200&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;0.794&amp;#8211;1.812&lt;/td&gt;&lt;td align="char" char="."&gt;0.387&lt;/td&gt;&lt;td align="char" char="."&gt;0.933&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;0.518&amp;#8211;1.679&lt;/td&gt;&lt;td align="char" char="."&gt;0.817&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Getting time with other family/meeting their needs&lt;/td&gt;&lt;td align="char" char="("&gt;123 (47.1)&lt;/td&gt;&lt;td align="char" char="("&gt;57 (63.4)&lt;/td&gt;&lt;td align="char" char="."&gt;1.329&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;0.878&amp;#8211;2.011&lt;/td&gt;&lt;td align="char" char="."&gt;0.178&lt;/td&gt;&lt;td align="char" char="."&gt;1.162&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;0.657&amp;#8211;2.055&lt;/td&gt;&lt;td align="char" char="."&gt;0.606&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Educating others about your relative's disability&lt;/td&gt;&lt;td align="char" char="("&gt;116 (44.4)&lt;/td&gt;&lt;td align="char" char="("&gt;56 (39.4)&lt;/td&gt;&lt;td align="char" char="."&gt;1.229&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;0.811&amp;#8211;1.862&lt;/td&gt;&lt;td align="char" char="."&gt;0.332&lt;/td&gt;&lt;td align="char" char="."&gt;0.919&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;0.525&amp;#8211;1.611&lt;/td&gt;&lt;td align="char" char="."&gt;0.769&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Finding a temporary substitute to provide occasional care&lt;/td&gt;&lt;td align="char" char="("&gt;122 (46.7)&lt;/td&gt;&lt;td align="char" char="("&gt;51 (35.9)&lt;/td&gt;&lt;td align="char" char="."&gt;1.566&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;1.029&amp;#8211;2.384&lt;/td&gt;&lt;td align="char" char="."&gt;0.036&lt;/td&gt;&lt;td align="char" char="."&gt;1.191&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;0.665&amp;#8211;2.134&lt;/td&gt;&lt;td align="char" char="."&gt;0.557&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Meeting the financial burden of caregiving&lt;/td&gt;&lt;td align="char" char="("&gt;87 (33.3)&lt;/td&gt;&lt;td align="char" char="("&gt;44 (31.0)&lt;/td&gt;&lt;td align="char" char="."&gt;1.114&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;0.718&amp;#8211;1.727&lt;/td&gt;&lt;td align="char" char="."&gt;0.631&lt;/td&gt;&lt;td align="char" char="."&gt;0.915&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;0.501&amp;#8211;1.672&lt;/td&gt;&lt;td align="char" char="."&gt;0.772&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Providing physical assistance&lt;/td&gt;&lt;td align="char" char="("&gt;51 (19.5)&lt;/td&gt;&lt;td align="char" char="("&gt;16 (11.3)&lt;/td&gt;&lt;td align="char" char="."&gt;1.912&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;1.046&amp;#8211;3.497&lt;/td&gt;&lt;td align="char" char="."&gt;0.035&lt;/td&gt;&lt;td align="char" char="."&gt;0.681&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;0.319&amp;#8211;1.456&lt;/td&gt;&lt;td align="char" char="."&gt;0.322&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Other&lt;/td&gt;&lt;td align="char" char="("&gt;7 (2.7)&lt;/td&gt;&lt;td align="char" char="("&gt;5 (3.5)&lt;/td&gt;&lt;td align="char" char="."&gt;.755&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;0.235&amp;#8211;2.424&lt;/td&gt;&lt;td align="char" char="."&gt;0.637&lt;/td&gt;&lt;td align="char" char="."&gt;6.083&lt;/td&gt;&lt;td align="char" char="&amp;#8211;"&gt;0.835&amp;#8211;44.292&lt;/td&gt;&lt;td align="char" char="."&gt;0.075&lt;/td&gt;&lt;/tr&gt;&lt;/tbody&gt;&lt;/table&gt; </ephtml> </p> <p>4 <emph>Note</emph>: Adjusted odds ratios were calculated using Waisman ADL scores (high/low), caregiver age, total number of informal supports, total number of formal supports, income (high/low), PROMIS mental and physical scores, COVID period (Pre/post), State (NY/OH/TX/PA), and presence of problematic behaviours (Yes/No).</p> <p>Additionally, caregivers of a care recipient with a Medicaid waiver were more likely to identify 'finding a temporary substitute to provide occasional care' (OR = 1.566, 95% CI: 1.029–2.384, <emph>p</emph> = .036) and 'providing physical assistance' (OR = 1.912, 95% CI: 1.046–3.497, <emph>p</emph> = .035) as personally challenging compared to caregivers of care recipients without a Medicaid waiver. However, after controlling for the above covariates, these results were no longer significantly associated with the presence of a Medicaid waiver (Table 5). Sensitivity analysis for different states of residence showed state residency affected the impact of Medicaid Waivers on specific challenges, most notably, finding paid help. Results of statistical analyses were unchanged whether the data was collected before the COVID‐19 pandemic or during the start of the pandemic with the exception that finding activities for the care recipient to participate in became more challenging.</p> <hd id="AN0179071284-20">DISCUSSION</hd> <p>The present study aimed to characterise a group of caregivers of individuals with intellectual and developmental disabilities and their needs across New York, Ohio, Pennsylvania, and Texas. This study identified the most pressing needs and challenges of caregivers of individuals with intellectual and developmental disabilities. This study also identified the differences in needs and challenges given the presence of LTC supports, as measured by receiving Medicaid waiver services. These results expand upon previous literature which demonstrate that caregivers of individuals with intellectual and developmental disabilities face many challenges, have many unmet needs, and lack the support to be able to handle these responsibilities (Broyles et al., [<reflink idref="bib2" id="ref37">2</reflink>]; Lee &amp; Burke, [<reflink idref="bib15" id="ref38">15</reflink>]; McConkey, [<reflink idref="bib18" id="ref39">18</reflink>]; Miodrag &amp; Hodapp, [<reflink idref="bib21" id="ref40">21</reflink>]; Santos et al., [<reflink idref="bib27" id="ref41">27</reflink>]; Weeks et al., [<reflink idref="bib33" id="ref42">33</reflink>]). While our study did not directly assess the relationship between types of services and caregiver burden, it is important to acknowledge that caregiver burden may vary based on type of services received and the availability and adequacy of support services (Williamson et al., [<reflink idref="bib35" id="ref43">35</reflink>]). Nonetheless, our results have shown that current formal and informal supports as well as Medicaid waiver access may be insufficient to provide enough support for this population.</p> <hd id="AN0179071284-21">Emotional challenges of caregiving</hd> <p>Caregivers in our study suffered from a higher degree of caregiver burden and self‐reported worse health than that of the general population. This corroborates previous findings illustrating that caregivers suffer from worse health than non‐caregivers (Gallagher et al., [<reflink idref="bib11" id="ref44">11</reflink>]; Yamaki et al., [<reflink idref="bib37" id="ref45">37</reflink>]). Caregivers of individuals with intellectual and developmental disabilities in this study and previous studies have reported high amounts of stress, highlighting the importance of addressing the mental health needs of caregivers. Managing their own emotional or mental distress was the most personally challenging for caregivers in the study. Even though these caregivers experience increased stress and decreased mental health, few reported receiving mental health support and social support. Social support has been associated with a further progression in long‐term care planning and less burden (Santos et al., [<reflink idref="bib27" id="ref46">27</reflink>]).</p> <p>In this study, caregivers reported that managing difficult behaviours was the most challenging part of caregiving, which compounds the difficulty to find respite care. Finding temporary care could help caregivers avoid burnout, but this is especially hard for this population because care takers must be familiar with the care recipient's capabilities and how to help them. According to our findings, care recipients with Medicaid waivers either are more likely to have problematic behaviours or Medicaid waivers do not completely address caregiving challenges associated with problematic behaviours, which would further add to the difficulty to find temporary care. This underscores the importance of expanding access to finding care for an individual with intellectual and developmental disabilities. The lack of mental health supports of caregivers of individuals with intellectual and developmental disabilities is important because caregiver mental health contributes to the quality‐of‐care delivery and outcomes of care recipients (Panicker &amp; Ramesh, [<reflink idref="bib23" id="ref47">23</reflink>]). It is also important to address caregiver mental health and emotional needs so that they avoid burnout, which is a concern given the longevity of care needed for individuals with intellectual and developmental disabilities. The mental health of caregivers should be addressed by providers and resources for mental health support should be shared with families.</p> <hd id="AN0179071284-22">Financial challenges of caregiving</hd> <p>Regardless of income and educational attainment, caregivers in this study reported financial difficulty as a result of their caregiving responsibilities in the year prior to data collection. Regardless of income, 'Understanding and managing legal and financial issues' was identified as a significant challenge. Lavelle et al. ([<reflink idref="bib14" id="ref48">14</reflink>]) estimated the cost of caring for an individual with ASD in the United States, including healthcare and non‐healthcare services, to be $17,081 per year beyond the cost of caring for a child without ASD. Given that formal long‐term care supports are the fastest proportion of Medicaid state budgets, quantifying caregiver reported needs is important to ensure that funding is used in the most impactful way. The current study showed that caregivers struggled to meet expenses as a result of their caregiving duties and most of the sample reported that the care recipient was receiving Medicaid waiver services. Our sample included caregivers who are seemingly the highest earners, most educated, and are accessing the most resources, yet are still struggling. Programmes that provide government assistance and financial support like New York's Consumer Direct Personal Assistance Program (CDPAP) are increasingly under scrutiny for abuse and fraud, but they remain an important source of support (New York Claimed Federal Reimbursement for Consumer‐Directed Personal Assistance Services That Did Not Meet Medicaid Requirements Audit (A‐02‐16‐01026) 06‐04‐2018, [<reflink idref="bib22" id="ref49">22</reflink>]).</p> <hd id="AN0179071284-23">Needs of caregivers with access to Medicaid waivers</hd> <p>This study found that caregivers identified many day‐to‐day needs as challenges, even with access to Medicaid Waiver services. These challenges included finding activities the recipient can participate in, finding paid help, helping with their communication, assisting with personal care, and coordinating and managing medications. Caregivers of individuals with intellectual and developmental disabilities have identified prescriber understanding of insurance, lack of continuity with care, poor communication, lack of patient compliance, lack of caregiver understanding, and unequipped health systems as barriers to medication management (Erickson et al., [<reflink idref="bib9" id="ref50">9</reflink>]). Medication management is one day‐to‐day challenge that the Medicaid waiver should assist caregivers and their families with. Medicaid waivers may provide open access for families who need assistance, but in our sample, caregivers often reported difficulty identifying and obtaining sufficient assistance despite having Medicaid waivers. This supports the further implementation of navigator programmes to guide caregivers through available resources that the Medicaid Waiver provides (Disability Program Navigator (DPN) (Summary), [<reflink idref="bib6" id="ref51">6</reflink>]). The benefit of patient navigator programmes has been long established in areas of underserved populations. In this case, there is a potential for increased utilisation of available resources through the Waiver programmes, increased healthcare access and quality for this population, and the potential to address issues relating to distrust of the healthcare system and its providers through the implementation and expansion of navigator programmes.</p> <p>These findings may demonstrate that current formal support is insufficient in providing support for individuals with intellectual and developmental disabilities, as well as their caregivers. This issue may apply across all incomes, but more so for those with limited incomes. Caregivers in our study who had higher education and incomes were also more likely to report longer term needs like finding social activities for their loved one and managing legal and financial issues. This may be because caregivers with lower incomes and education are focused on more acute needs like finding paid help and assisting with the care recipient's personal care. Overall, caregivers identified understanding how to manage the financial and legal problems of the care recipient to be the second most challenging aspect of caregiving. It is unclear how much cash‐benefit assistance programmes and specialty accounts like special needs trusts and [<reflink idref="bib1" id="ref52">1</reflink>] (<emph>ABLE Accounts—Tax Benefit for People with Disabilities</emph>)—tax‐advantaged savings and investment accounts for individuals with disabilities—were used by our cohort. These programmes and policy changes were put in place to improve financial stability for individuals with disabilities, and yet, are not widely used (The Financial Health of People with Disabilities, [<reflink idref="bib32" id="ref53">32</reflink>]). Resources should be provided to families to help them better understand the financial considerations of having a loved one with an intellectual and developmental disability.</p> <hd id="AN0179071284-24">Limitations</hd> <p>The convenience sample used for the study was predominantly White with a high income, and participants recruited were likely already engaged with their respective healthcare systems or advocacy organisations, indicating that our sample may not be representative of a population of caregivers disconnected from support services. Further research is needed to focus on more racially and economically diverse populations as well as individuals with intellectual and developmental disabilities who live in an institutional setting. The individuals with intellectual and developmental disabilities included in this study varied widely in age, and the needs of caregivers may be dependent on the age of the individual. Therefore, further research should elucidate the relationship between the needs of caregivers of individuals with intellectual and developmental disabilities and the age of the individual with the intellectual and developmental disability. Caregivers with more limited incomes should be surveyed to examine where and to what extent current formal support is insufficient to provide for a loved one with an intellectual and developmental disability. Furthermore, because the study started just prior to the COVID pandemic and continued through the first year of the pandemic, the unmeasured impact of COVID impact over time is not well accounted for. Families without services due to the pandemic could be different from that of families without services prior to the pandemic.</p> <p>This study included participants from across only four states. Future research should survey participants from even more geographically diverse areas, particularly those in more rural areas where less access to healthcare and advocacy organisations may exist. There also may be significant variations in state programmes and their impact on specific challenges that caregivers face. Also, the COVID‐19 pandemic has highlighted inequities in healthcare, and future research must examine how the pandemic has changed the scope of the caregiver needs identified in this paper.</p> <p>This research has identified many characteristics and unmet needs of caregivers and identified areas that caregivers need to be supported through both policy and practice. However, future research should aim to look at the associations between these characteristics and LTC planning behaviours. This will help identify the specific ways that caregivers can be supported and can be encouraged to plan for the future of an individual with an intellectual and developmental disability.</p> <hd id="AN0179071284-25">CONCLUSION</hd> <p>Family caregivers of individuals with intellectual and developmental disabilities have a vital role in the community and in community‐based care. However, they face countless challenges and have many unmet needs. These needs must be identified and acknowledged in order to adequately support caregivers in their responsibilities and planning for the future of the individual with an intellectual and developmental disability. Through this research, we have identified three key areas where support and more research are needed: financial needs, mental health needs, and unique supports based on the particular situation of the caregiver. Current formal supports may be insufficient in providing necessary help to caregivers. Medicaid waivers are one of the most impactful resources this population has for day‐to‐day help, yet in our study, caregivers with waivers still had many unmet needs. This supports the need for increased funding for Medicaid Waiver programmes as well as navigator programmes to encourage the full utilisation of the resources that Medicaid Waivers provide. Future research should examine caregiver challenges by state to better understand the potential Medicaid waiver policy implications on family caregivers and compare existing programmes. Future research also needs to characterise the needs and challenges of caregivers from more diverse backgrounds in order to support them in planning for the future of the care recipient.</p> <hd id="AN0179071284-26">AUTHOR CONTRIBUTIONS</hd> <p> <bold>Ariana M. Mastrogiannis:</bold> Investigation; data curation; writing—original draft. <bold>Caren Steinway:</bold> Conceptualization; methodology; investigation; data curation; writing—original draft; supervision; project administration. <bold>Telmo C. Santos</bold>: Investigation; writing—review and editing. <bold>Jack Chen</bold>: Methodology; software; validation; formal analysis; data curation; writing—original Draft. <bold>John Berens</bold>: Investigation; data curation; writing—review and editing; supervision. <bold>Thomas Davis:</bold> Investigation; data curation; writing—review and editing; supervision. <bold>Michelle Cornacchia:</bold> Investigation; data curation; writing—review and editing; supervision. <bold>Jason Woodward:</bold> Investigation; data curation; writing—review and editing; supervision. <bold>Ilka Riddle</bold>: Investigation; data curation; writing—review and editing; supervision. <bold>Brittany Spicer</bold>: Data curation; writing—review and editing. <bold>Charmaine Wright</bold>: Investigation; data curation; writing—review and editing, supervision. <bold>Lee A. Lindquist</bold>: Conceptualization; writing—review and editing. <bold>Sophia Jan:</bold> Conceptualization; methodology; investigation; data curation; writing—original draft; supervision.</p> <hd id="AN0179071284-27">ACKNOWLEDGEMENTS</hd> <p>The authors would like to thank Dr. Mary Ciccarelli from Indiana University for her help with survey development and support throughout this project and Dr. Michelle Katzow, Toyosi Oluwole, and Andrea Zuzarte from Cohen Children's Medical Center for their feedback on the manuscript.</p> <hd id="AN0179071284-28">FUNDING INFORMATION</hd> <p>The research presented in this article was fully funded supported by the Rx Foundation and the Patrick and Catherine Weldon Donaghue Medical Research Foundation.</p> <hd id="AN0179071284-29">CONFLICT OF INTEREST STATEMENT</hd> <p>The authors declare no conflict of interest.</p> <hd id="AN0179071284-30">DATA AVAILABILITY STATEMENT</hd> <p>The data that support the findings of this study are available on request from the corresponding author. 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| Items | – Name: Title Label: Title Group: Ti Data: Medicaid Long-Term Services and Supports and Caregiving Needs of Caregivers of Individuals with Intellectual and Developmental Disabilities – Name: Language Label: Language Group: Lang Data: English – Name: Author Label: Authors Group: Au Data: <searchLink fieldCode="AR" term="%22Ariana+M%2E+Mastrogiannis%22">Ariana M. Mastrogiannis</searchLink><br /><searchLink fieldCode="AR" term="%22Caren+Steinway%22">Caren Steinway</searchLink><br /><searchLink fieldCode="AR" term="%22Telmo+C%2E+Santos%22">Telmo C. Santos</searchLink><br /><searchLink fieldCode="AR" term="%22Jack+Chen%22">Jack Chen</searchLink><br /><searchLink fieldCode="AR" term="%22John+Berens%22">John Berens</searchLink><br /><searchLink fieldCode="AR" term="%22Thomas+Davis%22">Thomas Davis</searchLink><br /><searchLink fieldCode="AR" term="%22Michelle+Cornacchia%22">Michelle Cornacchia</searchLink><br /><searchLink fieldCode="AR" term="%22Jason+Woodward%22">Jason Woodward</searchLink><br /><searchLink fieldCode="AR" term="%22Ilka+Riddle%22">Ilka Riddle</searchLink><br /><searchLink fieldCode="AR" term="%22Brittany+Spicer%22">Brittany Spicer</searchLink><br /><searchLink fieldCode="AR" term="%22Charmaine+Wright%22">Charmaine Wright</searchLink><br /><searchLink fieldCode="AR" term="%22Lee+A%2E+Lindquist%22">Lee A. Lindquist</searchLink><br /><searchLink fieldCode="AR" term="%22Sophia+Jan%22">Sophia Jan</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0002-1796-6464">0000-0002-1796-6464</externalLink>) – Name: TitleSource Label: Source Group: Src Data: <searchLink fieldCode="SO" term="%22Journal+of+Applied+Research+in+Intellectual+Disabilities%22"><i>Journal of Applied Research in Intellectual Disabilities</i></searchLink>. 2024 37(5). – Name: Avail Label: Availability Group: Avail Data: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us – Name: PeerReviewed Label: Peer Reviewed Group: SrcInfo Data: Y – Name: Pages Label: Page Count Group: Src Data: 13 – Name: DatePubCY Label: Publication Date Group: Date Data: 2024 – Name: TypeDocument Label: Document Type Group: TypDoc Data: Journal Articles<br />Reports - Research – Name: Subject Label: Descriptors Group: Su Data: <searchLink fieldCode="DE" term="%22Caregivers%22">Caregivers</searchLink><br /><searchLink fieldCode="DE" term="%22Intellectual+Disability%22">Intellectual Disability</searchLink><br /><searchLink fieldCode="DE" term="%22Developmental+Disabilities%22">Developmental Disabilities</searchLink><br /><searchLink fieldCode="DE" term="%22Needs%22">Needs</searchLink><br /><searchLink fieldCode="DE" term="%22Services%22">Services</searchLink><br /><searchLink fieldCode="DE" term="%22Health+Insurance%22">Health Insurance</searchLink><br /><searchLink fieldCode="DE" term="%22Stress+Variables%22">Stress Variables</searchLink><br /><searchLink fieldCode="DE" term="%22Federal+Programs%22">Federal Programs</searchLink><br /><searchLink fieldCode="DE" term="%22Health+Services%22">Health Services</searchLink><br /><searchLink fieldCode="DE" term="%22Barriers%22">Barriers</searchLink><br /><searchLink fieldCode="DE" term="%22Social+Support+Groups%22">Social Support Groups</searchLink> – Name: Subject Label: Geographic Terms Group: Su Data: <searchLink fieldCode="DE" term="%22New+York%22">New York</searchLink><br /><searchLink fieldCode="DE" term="%22Ohio%22">Ohio</searchLink><br /><searchLink fieldCode="DE" term="%22Texas%22">Texas</searchLink><br /><searchLink fieldCode="DE" term="%22Pennsylvania%22">Pennsylvania</searchLink> – Name: DOI Label: DOI Group: ID Data: 10.1111/jar.13289 – Name: ISSN Label: ISSN Group: ISSN Data: 1360-2322<br />1468-3148 – Name: Abstract Label: Abstract Group: Ab Data: Background: Long-term care services are funded primarily by Medicaid long-term services and support in the United States, where eligibility is based on care needs of the individual with intellectual and developmental disability alone. Impact of Medicaid waiver services on self-reported caregiver needs is not well understood. Method: Caregivers (n = 405) of individuals with intellectual and developmental disabilities across four states (NY, OH, TX, and PA) completed an online survey. Results: Caregivers reported a moderate degree of burden and susceptibility of stress-induced health breakdown. Despite controlling for the activities of daily living of the care recipient, caregivers of individuals with Medicaid Waiver services reported greater difficulty managing medications (p = 0.013) and finding paid help (p < 0.001) than caregivers of individuals without services. – Name: AbstractInfo Label: Abstractor Group: Ab Data: As Provided – Name: DateEntry Label: Entry Date Group: Date Data: 2024 – Name: AN Label: Accession Number Group: ID Data: EJ1435951 |
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| RecordInfo | BibRecord: BibEntity: Identifiers: – Type: doi Value: 10.1111/jar.13289 Languages: – Text: English PhysicalDescription: Pagination: PageCount: 13 Subjects: – SubjectFull: Caregivers Type: general – SubjectFull: Intellectual Disability Type: general – SubjectFull: Developmental Disabilities Type: general – SubjectFull: Needs Type: general – SubjectFull: Services Type: general – SubjectFull: Health Insurance Type: general – SubjectFull: Stress Variables Type: general – SubjectFull: Federal Programs Type: general – SubjectFull: Health Services Type: general – SubjectFull: Barriers Type: general – SubjectFull: Social Support Groups Type: general – SubjectFull: New York Type: general – SubjectFull: Ohio Type: general – SubjectFull: Texas Type: general – SubjectFull: Pennsylvania Type: general Titles: – TitleFull: Medicaid Long-Term Services and Supports and Caregiving Needs of Caregivers of Individuals with Intellectual and Developmental Disabilities Type: main BibRelationships: HasContributorRelationships: – PersonEntity: Name: NameFull: Ariana M. Mastrogiannis – PersonEntity: Name: NameFull: Caren Steinway – PersonEntity: Name: NameFull: Telmo C. Santos – PersonEntity: Name: NameFull: Jack Chen – PersonEntity: Name: NameFull: John Berens – PersonEntity: Name: NameFull: Thomas Davis – PersonEntity: Name: NameFull: Michelle Cornacchia – PersonEntity: Name: NameFull: Jason Woodward – PersonEntity: Name: NameFull: Ilka Riddle – PersonEntity: Name: NameFull: Brittany Spicer – PersonEntity: Name: NameFull: Charmaine Wright – PersonEntity: Name: NameFull: Lee A. Lindquist – PersonEntity: Name: NameFull: Sophia Jan IsPartOfRelationships: – BibEntity: Dates: – D: 01 M: 09 Type: published Y: 2024 Identifiers: – Type: issn-print Value: 1360-2322 – Type: issn-electronic Value: 1468-3148 Numbering: – Type: volume Value: 37 – Type: issue Value: 5 Titles: – TitleFull: Journal of Applied Research in Intellectual Disabilities Type: main |
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